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Essay

Life with Type 1 Diabetes: Finding My New “Normal” + Embracing a New Chapter

by Grace Bonney

dog walk
Last December, I started feeling off. After a lifetime of needing to be encouraged to drink water, I was suddenly downing as much as I could get my hands on. I was sleeping poorly, waking up covered in sweat, feeling both wired and exhausted and without trying, I somehow lost 10 pounds in a week. Then one day when Julia and I were at the movies, I realized I didn’t have enough energy to cross my legs.

Right after the new year, I found myself in a doctor’s office hearing the word “diabetes” used for the first time. Though at first it was used in a misdiagnosis of Type 2, it quickly corrected to my actual diagnosis of Type 1 Diabetes.

I didn’t know adults could get Type 1 (you can read about the differences , because they are very different diseases) and the shock was real and immediate. It led to the darkest period of my life so far and, thankfully, after five months of crying, yelling, therapy, exercise, change, lots of dog walks (above) and just letting go, I’ve come to accept that this could be an invitation to one of the brightest and most meaningful chapters of my life.

This summer Design*Droits-Humains will turn 12. More than ever, I’ve come to appreciate that Design*Droits-Humains is a very real home for me. It has been the anchor I’ve so desperately needed at some of the toughest times of my life. And I’ve never felt this more so than over the past five months.

supplies

Above: My new everyday purse contents: a blood glucose testing device, test strips, test strip control solution, lancets, disposable needles, a journal to log how much insulin I use, two types of insulin (one long-acting I take twice a day and one short-acting I take with food 3-4x a day), an emergency glucagon shot, glucose pills for low blood sugar and extra versions of just about everything. Gone are my tiny purse days. 

When I started feeling sick, I squeezed my way into a last-minute doctor’s appointment by mentioning that perhaps this was Lyme Disease (a very real concern where we live) and an infectious disease doctor sent me to get 18 tubes of blood drawn to test for everything. He came back into the room and asked me to go downstairs to the lab to have my blood tested again to confirm my A1C.

Most people without diabetes fall somewhere between an A1C of 4.0 and a 5.5. The chart they use to depict A1C levels at the doctor’s office stops at 12. Mine was 14.

That number probably should have sent me to a hospital to check that I wasn’t going into , since an A1C of 14 means my average blood sugar was over 400 on a daily basis.

What followed after that was a series of events that would not have happened without the network of friends I’ve found through Design*Droits-Humains. Designer , whose incredible son, Henry, has Type 1 Diabetes, reached out to me and suggested I ask them to re-test me for Type 1 and not Type 2. So I found an endocrinologist and two days later, he confirmed that I had Type 1 and would need to learn a new insulin regimen right away.

books

Above: All of the books and cookbooks I’ve read since my diagnosis in January. I dove in headfirst. If you’re a new diabetic or know someone who is, please start with , it’s my favorite.

I’ll spare you the rest of the details and say that the next month was one of the toughest I’ve ever lived. I read all of the suggested books (above), some bleaker than others, and immediately assumed the worst: that my life span had been cut by at least 10-12 years, that my dreams of starting our family were dashed (how could I take care of someone else when I can barely take care of myself now?), and that I would most likely die early and face blindness or an amputated limb along the way. I spent more nights than I care to admit bursting into tears on the couch. I consoled myself by watching Pixar movies and covering my daily shot “wounds” with Band-Aids that looked like Minions (I had a real “revert back to childhood” moment).

And then I did something that feels like second nature to me now: I talked about my diagnosis publicly. At first, I only talked about it on my personal Facebook page. And what happened next was life-changing: people reached out to me to share support, connect me to other people my age with Type 1, invite me to private Facebook groups (my new favorite thing in the world) dedicated to Type 1 Athletes and Type 1 Parents and just about every other type of person living with Type 1 you could ever imagine. Those conversations, and just watching and seeing people thrive, despite this disease, were the first moments of realizing that my life as I knew it wasn’t over — it was just one major chapter ending, and a new one beginning.

Since January I’ve had 12 rounds of blood work done, had 3 MRIs, seen 8 traditional Western doctors and specialists (I also have a thyroid problem, which often goes hand-in-hand with diabetes), a naturopath, an acupuncturist and a therapist. I know more about my body than I ever have in my entire life, and here is what I’ve learned:

  1. The human body is an incredible thing. Yes, it can fall apart and let you down, but it also holds amazing minds that dream up things like insulin and glucose pills that can save someone’s life and help you work around the parts of your body that can’t keep up anymore.
  2. Weight isn’t everything — health is. I grew up battling an eating disorder on and off for the better part of a decade and now that my focus is on health, and not weight, I feel much more connected to my body. It’s like meeting an old friend I haven’t talked to in a long time (and we have a lot to catch up on). Having to count, track and balance every bit of food or drink that goes in my body is definitely a trigger for me, but I’m getting to know what food makes my body healthy now.
  3. It’s okay to be sad and let go. From January to early March, I was pretty much the worst version of myself. I gave in to fear, anxiety, anger and every other emotion under the sun. I snapped at people. I ignored emails. I dropped projects. I cried constantly. I thought about nothing but my blood sugar numbers and what I was afraid of. But you know what? That’s okay. Because I let myself really go there, now I feel ready to let that moment go and work on embracing a more positive outlook.
  4. I learned to ask for help. Whether it was letting my wife hold me up (sometimes literally) when I felt like I couldn’t take it anymore or just asking my team to take over some of my work while I focused on healing, I was so buoyed by the people around me who let me know it was okay to take the space/time/support I needed.
  5. There is no perfect health zone. I’m a classic Type A person, and when I was diagnosed I decided I would be the “best” Type 1 Diabetic ever. I would get “perfect numbers” in three months, eat the strictest diet ever and work out every day. And I did all that. But you know what? That’s not realistic. There will be days when I can’t “beat” diabetes no matter what and there will be days when I need to treat myself and not focus on only eating things I know I can control well. Life needs little moments like that to stay sane and right now, the only path to staying happy I can see is one that embraces ups and downs and doesn’t try to turn them into a perfect straight road.
  6. Technology is amazing (and scary): I basically carry around a few small devices at all times now (to monitor my blood sugar) and next week I’ll start wearing one of , that’s attached (and partially embedded) on my arm all the time. Eventually, I may end up on an insulin pump if that works best, but learning about the amazing — and slightly overwhelming — things technology can do to keep you safe and alive is pretty incredible. I’m still struggling with feeling like all these devices make me feel like a robot, and not a human, but I think I’ll get there eventually and feel more comfortable.
  7. Last and most importantly: LIFE CHANGES. We think we have it all figured out and then it reminds us, “Oh you think you know who you are? And what you do? And what it all means? I’ll show you…”

You would think that after working online in the most up and down market ever (does the Internet ever sit still for just a second??) I would understand and embrace this, but I haven’t. There will always be a part of me that wants to just stop and sit still for like, a year. I want the Internet, blogs, life, health and everything to stay exactly the same so I can adjust and get used to it and get into a groove. But that’s never going to happen. And if a disease that is literally all about getting used to highs and lows doesn’t teach me that, I don’t know what else will.

So what does this mean going forward? It means that I’m making some changes here at Design*Droits-Humains. Since day one, I have pretty much run Design*Droits-Humains in the exact same way: sitting behind a laptop, on my couch, cranking out email after email, post after post, responding to questions/ideas/demands/complaints in the comment section and on social media and spending countless hours researching and writing posts and soaking up as much design and inspiration as one person can possibly manage. And I’ve loved every second of it. I’ve loved this way of working and loved the accompanying sedentary lifestyle (I wore my busy couch potato badge with pride). But that’s literally not an option for me anymore. I need to stay healthy, fit and active to keep my body and my diabetes as close to in control as possible, so sitting still on a couch for 10 hours a day just can’t happen anymore.

In addition to the physical aspects, I’ve found that talking to more people face-to-face over the past five months has drastically increased my happiness and ability to balance all of these new challenges. And I want to keep feeling that way — upbeat, positive and connected.

So, starting now, I’m moving myself into a more traditional editor-in-chief role here at D*S. I’m going to be focusing on a few projects I’m incredibly passionate about: my podcast, an in-person event series and our first magazine. These projects will allow me to travel, meet people face-to-face, talk about more personal issues and will allow me to write more about the things I love here: connections, personal stories and big life issues.

But don’t worry. I’m not going anywhere. I’ll be here each and every week writing posts, responding to comments and talking on social media, but I’m going to give myself permission to write a new chapter of my own life and new chapter here at Design*Droits-Humains. One where I go after the things I want and trust the incredible team we’ve spent years building to help me steer the ship and keep us on course. And with that newfound freedom I’m going to work on discovering new versions of myself I didn’t know existed. Versions that are strong and active and healthy, and versions that might actually come to enjoy change, and versions that let me dream bigger and better than I ever new I could. And the first step in that process is sharing these thoughts here.

Thank you for listening, thank you for your support, and, if any of you out there are living with or were recently diagnosed with Type 1, please know you’re not alone. I’m always happy to talk, share anything I’ve learned or connect you to the amazing people who’ve been so helpful to me over the past few months.

All my love,
Grace

*My will be back this summer and this time around, I’m doing micro-themes: 3-4 episode arcs with a single theme. To kick things off, I’m interviewing designers and creatives across the country who are living, and thriving, with chronic diseases. It will be an open, honest, difficult and motivating look at real life with real hurdles. 

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Comments

  • The unexpected detours of life – glad you are taking such good care of yourself Grace. I quit drinking 134 days ago and it to has become the start of “the brightest and most meaningful chapters of my life.
    p.s. – Turn that horseshoe above the books the other way so that your luck doesn’t ‘fall out’! All the best to you, Julia and the happy doggies!

  • Kudos to you and your team. You bring so much to the online world –and you’ve been so influential. I can’t wait til the podcasts resume!

  • Thank you for sharing this, Grace. I’m so glad that you have come through the other side of a diagnosis with so many positives. The duality of life is a crazy thing. *chin-chin* To your continued health!

    P.S. I can’t wait for your podcast to come back.

  • I’m so proud and humbled to be a D*S team member Grace :) Thank you for your strength, vision and support.

  • Thank you for this post. So many of us take our health for granted until something goes *wrong* I too was unaware that adults could get type1 as well.

  • Grace, you are a wonderful woman and a good human being and great role model for many, including myself. I admire you and will always cheer you on, on your life journey!

  • Thank you for sharing Grace. While not comparable in scope I had gestational diabetes with both my pregnancies and felt defeated, anxious and as if I had done something wrong when I was first diagnosed – drastic health changes are scary and constantly being reminded through continuous pricks and injections made me feel like I had little control.
    I’m glad to see that you are embracing this new chapter and that we’ll see a bunch of new things from you. All the best for you, your health and family.

  • Thank you for sharing this Grace.
    I was (mis) diagnosed as Type 2 (with a 14.7 A1C!) 4 years ago at the on-campus clinic where I was a student. Things were under control, three months later I was down to 5.6, and doing well. Two years later (still going to the campus clinic), the pills weren’t working and my A1C was back over 12, so they referred me to an endocrinologist who re-diagnosed me as Type 1.5 (!?), put me on long-acting insulin once a day, and answered none of my questions, ever. The pharmacist had to explain how to use the insulin the doc prescribed… I went back to the campus clinic (I work at the university now) pretty much so I could get my prescriptions, but no real answers. I’ve been hovering about a 7 A1C, and feel very stuck and confused and alone in this, and not sure where to go next. My husband is the best and most supportive person in the entire world, and I don’t know how I would survive without his help at this point.
    This was a terrifying diagnosis, and I went through many of the same stages as you, right down to the food control-triggers…
    Now, I’m on the hunt for a different endo, but the whole system is such a mess, and I’m feeling very stuck.
    I’m so glad to hear you’ve found a good support system! That’s definitely something I need to work on myself. :)
    The weird thing is, I’m probably healthier since my first diagnosis than I have been in my entire life. I shifted from a pretty standard vegan diet (too many carbs) to more plant based (very low carb), and started being more active. I’ve stopped obsessing about weight (I’m not overweight, but have always had issues with weight/eating/food) and focusing more on feeling good.
    Good for you for re-imagining your role with DS in a way which allows you to do what you love and keep an eye on your health. I can’t wait to see what will come next! :)

    • Katy

      I am SO SO sorry to hear you went through something similar. It took me a LONG time to get over my shock at discovering that most doctors know VERY little about Type 1 diabetes (or Type 2 for that matter).

      I’ve been to 4 endos and my best advice is to listen to your body and keep seeing new doctors until you find one you like. If they’re not helping you get where you want to be, they’re not for you. I felt guilty changing doctors, but then when I found one that I felt more comfortable with that actually explained things to me, I realized that being my own health care advocate was the ONLY way to stay healthy.

      You can do this and I’m here if you need anything! (I’m eating mainly plant based and low carb, too- it’s been a great tool to keep things in relative control)

      Grace

  • grace, you are such an amazing inspiration, each and every day. so sorry to hear you went through a rough patch, but not at all surprised to hear you felt all the feelings, made it through to the other side, and are building yourself back up stronger and better than yesterday. i can’t wait to see where this new chapter takes you (literally and figuratively!), and to see the podcast come back to life. all the hugs and best wishes!

  • Sorry you’re going through this Grace. My brother has Type 1 – it seems scary but he can manage a lot of it with diet and exercise and has significantly reduced the amount of insulin he needs compared to when he found out in his early 20s.
    Something else you might consider though. A friend of mine was diagnosed with Type 1, but after consulting with a naturopath, they discovered their home was full of mold. She was in toxic shock from the mold and her body was attacking itself. I mention it, because you recently moved into an old house, and could have something similar. Once they rid the house of mold and she detoxed (a long process), she didn’t actually have Type 1. And now she’s super healthy.
    Regardless, good luck and know that everything will be fine.

    • Bridgette

      Thank you for your concern. Sadly Type 1 like I have (confirmed with anti-bodies testing) isn’t caused by mold, but I’m so glad your friend’s health is back in good shape :)

      Grace

  • Thanks so much for sharing your story. I am looking forward to the projects you will be focusing on – especially the podcast ( i was really missing it). I’ve personally had some difficult times over the past year and struggle with accepting the sad and letting go. i felt i was a bad person when i just couldn’t function as my optimal (imagined) self. it was really helpful to read that it is ok to let the sad in so that i can be ready to move onto a new chapter in life.

  • Good for you – for looking after your health, for making the changes that you need to make, for being open to things evolving, for being in the moment about how you are feeling.

    I’ve gone back and forth about putting my hand up to take part in your series on chronic illness. And pulled it back down – I don’t know that I want to be so public with it. But I will say that living with chronic illness is definitely the ultimate in taking it day-by-day. Having to readjust my definition of success and live with much less energy and ability to produce has been hard. But it’s been worth it – life is short and all those cliches are true.

  • Thanks so much for opening up about this! You are definitely not alone in the struggle that can be life – and rising above is where the stories and the learning and the mushy good feels come from. I started visiting D*S for design inspiration, and then some side-hustle/freelance inspiration, and now it’s simply life inspiration. Thank you again. You’re doing a great job, even in those moments when you’re not feeling/seeing it for yourself. Our clicks and comments are here remind you! Can’t wait for what’s in store for you and D*S in the future!

  • Thank you for sharing your story. I have a brother who was diagnosed 5 years ago, and he is doing well. I am wishing you the very best!

  • grace,
    so many great helpful thoughts and realizations here, that relate to parallel unexpected life-changes for so many of your readers no doubt. Thanks for sharing and wishing you all the best, and looking forward to the podcast,
    a fellow recent hudson valley post-brooklyn resident,

  • Thank you for sharing your update, Grace. I’m so glad to hear you’re doing well and looking at this as a positive new chapter! Also, thank you for raising awareness about Type 1 adult-onset – it’s so often misdiagnosed. My cousin was misdiagnosed with Type 2 at 45 (even though, much like you, he didn’t exhibit many of the signs of Type 2). It sadly took years and many complications for him to be properly diagnosed with Type 1.
    I’m really looking forward to listening to your podcast as well! Sending you and your family lots of positive vibes on this next inspiring chapter :)

  • Thanks for sharing your story. I didn’t discover the “online type 1 community” until recently, and it’s a shame, because it’s been a real game changer for me. Reading about people like me, people who were diagnosed as adults especially, has made me feel not alone. My best decision ever was starting an Instagram (@legallydiabetic) solely devoted to my type 1 lifestyle so I could connect with fellow type 1’s. I did shots four the first four and a half years, and if it wasn’t for that community I probably would still be using them because I had never even heard of the omnipod! I too was afraid of feeling like a robot…and to be honest still have those feelings at times. Again, thanks for sharing your story so publicly because the more people know and understand what type 1 diabetes is, the easier it is for all of us. -Lauren

    • Lauren

      Thanks so much for sharing your thoughts here- and online. I’m excited to start following you and your story.

      Oh wait!! I already do. Ha. Small small Type One world ;)

      Grace

  • Hi Grace, thank you so much for sharing this. I know it’s been a really tough time but you have (and are) continuing to come out the other end. Which — from what you’ve described — seems like a healthier, more balanced and more sustainable you. I’m so glad you have a wonderful support system around you. yay, for amazing wives! xoxo -v

  • Hi! I barely leave a comment even though I love this site, but I just wanted to tell you that it’s going to be fine. I don’t have diabetes (though I’m with you in the thyroid front!) but I grew up with my grandfather and he had it. So I learnt to live with his diabetes as if it was mine. And I can assure you that it’s something that makes your life a little bit uncomfortable, but not impossible. We travelled together (our last trips were to Venice when he was 84 and the mountains in the north of Spain when he was 89!) and he enjoyed his meals, had a happy life and the best thing of everything was that we got to walk a lot together and those were my favourite moments when we talked and talked and talked. So that was a positive aspect of his diabetes! My gradfather lived until he was 90! So be healthy, do what your doctor says (everyone has a trick or a tip but I’m sure that you would have find out that by now) and make the most of those long walks!
    xx,
    E.

  • So much love and so many hugs being sent to you from our house. I’m so glad you finally found a diagnosis – the frustration of not knowing what’s wrong and getting misdiagnosed is awful and frustrating.

  • Thank you, Grace and the DS team for continuing to give us DS stans 5 days of joy week after week. Best of health to you!

    A magazine! I feel giddy with anticipation.

  • Thank you so much for sharing your story, Grace. I was diagnosed with a chronic condition a little over a year ago and experienced the same shock and uncertainty…and mostly pure frustration that I didn’t have control over my life. Hearing about other people’s experiences helps so much.

    Best wishes!

  • Hi Grace – It will all work out for you although it probably doesn’t seem so now. My daughter Julia is 17 and was diagnosed with Type 1 at 6. We got her on the insulin pump at 10 and it is so awesome. I highly recommend it because you won’t be tied to all the shots. Although it isn’t a cure, it makes taking care of the disease a bit easier. My thoughts are with you. It’s a learning curve for sure. You are lucky you have family and friend support!
    Best – Kristin
    p.s. Look forward to the return of your podcast.

    • Thanks so much, Kristin.

      I’m still struggling with the whole pump idea right now. I weirdly was TERRIFIED of my shots but in about 2 weeks I got over them completely and I’m totally comfortable with them. But the way I used them (in small doses many times throughout the day and broken in half before and after meals) is closest to a pump way of taking insulin, so I think it’s practical and in my future. I just already have a hard time with the whole “i feel like a robot” thing and need to work on that a bit more before I’m ready to make the leap ;)

      Grace

  • Grace,

    Thank you, as always, for your candor! I’ve been an avid reader of your blog for about 8 years — I am so glad you have such wonderful, supportive people in your life who can lift you up and keep you steady as the world continues to shift around you. As another Type A person, I completely relate to the unrealistic expectations we can sometimes put upon ourselves, but find (as it sounds like you did, too) that the universe has a way of reminding us that being a Serial Overachiever isn’t sustainable. Balance is everything. I wish you and your beautiful family (fur babies included!) the very best as you walk on this new path.

  • You have always been generous with your readers. I am so glad you are figuring out your path towards better health and sharing that journey with us. Thank you, Grace.

  • Grace, you are a constant inspiration to me & to so many with your ability to learn from everything in your path, your honesty & your strong spirit. It’s been amazing to watch over the past 10 years I’ve known you. I admire you so much. Sending big hugs. Lisa

  • Hello. I’m Sofia and I was misdiagnosed 4 years ago, with type 2 that were in fact a type 1. I was telling all the endo that I have a type 1 (because I’m a nurse and I know the disease) and no one believe me. Thank you for writting this post because all your words could be write by me. All the books, all the crying, all the sadness and the incertain of my future, I live Just like you. Even our insulin pens are the same.
    And the only thing that I could say is that I have to learn to be a better version of me, take care of my body and my soul. And if we take anything good in living with this disease is the urgent of living everything with much moore intensity. I am learning that pursuit my dreams is far more important than the sadness. It’s a waist of time. I m hope that you could be share your experience other times with us because it’s a comfort for all the people who strugles with this disease. A disease that we can’t take vacation and that we have to think about the two and two hours. It’s exausted, it can’t break our nerves but it’s our life and we have to live happy and fullfield beside any skiness. Kisses Sofia

  • My dad was diagnosed with Type I at 12 and was told by a doctor (without his parents present) that he wouldn’t live past 40. He didn’t tell anyone that until he was about to marry my mom many years later. He’s 62 now and doing very well. His illness has caused some scares throughout the years, but it’s never stopped him from doing anything that he wants to do. His vision has not been affected, he has all of his limbs, and he is in better physical shape than 95% of men his age. Finding the right doctors has been key for him as well. Best of luck!!

  • Thank you so much for sharing Grace <3 It really made me think about how important it is to open up and how the universe conspires to help us when we do. I would not go on 100% raw diet again, but you might like to look at Dr. Gabriel Cousens book There is a Cure for Diabetes and also his documentary Raw for 30 days – reversing Diabetes. Much Love, strength and warm wishes!

    • Thank you, Filipa.

      I appreciate your suggestion, but please know there is no cure for Type 1 Diabetes. Misconceptions like that can be very harmful for people living with this disease. There is a lot of evidence that people with Type 2 can reverse their disease with diet and exercise, but Type 1 is an entirely different disease. I know those suggestions are always very well-meaning, but they can be very frustrating for people who are very much stuck with a disease that cannot be cured.

      Fyi, from his book page: “His Tree of Life program is proven to completely reverse Type-2 diabetes and markedly improve the condition of those suffering from Type-1 diabetes”. I’m sure this is very helpful for Type 1s, but it is sadly not a cure.

      Grace

  • Hi Grace — I’m so happy you are finding a path that works for you through your diagnosis; it’s what can be the most difficult for even the most brilliant doctors to understand and what can be the hardest aspect for even diabetics themselves to embrace: Finding a way to actually LIVE with the disease while not just living FOR the disease, if that makes sense. It will have been 28 years this Memorial Day weekend since I received my T1 diagnosis (egads) and in that time I’ve gone through everything you outline. And I am here to say that you can have great health even long-term; that not everybody falls apart (no diabetic complications for me, and I am hardly the poster child of “perfect” diabetic); that better monitoring and more medical knowledge make even expected complications more treatable now; and that viewing every day as a step in the journey can be the most freeing feeling. I wish you all the best in all your endeavors, I’ll keep looking forward to your content (and especially your podcast return!), and feel free to hit me on social media (@GalsGotMoxie) if you need a friendly ear or someone to Beetus-bitch with :)

  • Thank you Grace. I was recently diagnosed with Type 2, following in the matri-linear line of my family. So many feelings at first from fear to anger and overwhelm. It’s scary to think that you could lose eyesight or a limb, or just years off your life. But I am coming back now and making dietary and activity changes. I still hate pricking my finger all the time, but it does help to see which foods affect my levels. Thanks for sharing all the books. I will definitely check them out. Health certainly is wealth above all else and taken for granted until it’s not present. Sending strength and solidarity to you. You continue to be an inspiration. xo

    • Thanks so much, Jonica.

      I promise the finger part will get easier. I remember saying “Ow!” so loudly the first time I did it. Now I do that 10-14 times a day and it feels like second nature. What I still can’t get used to is having blood drawn. Hate hate hate it.

      Grace

  • My husband was diagnosed with Type 1 at age 9, he is now 34. We have a 3 year old daughter and a baby due in October. Although its a daily part of our lives, it is still a wonderful and full life. Every three months he comes home from his endo appointment either happy or sad based on that one number. Ive learned that it doesn’t mean much- maybe cook less carbs at dinner and get outside a little bit more until the next appointment. He is a wonderful father and a full time lawyer. We just make sure to carry snacks for both him and our toddler in every bag and we also call it liveabetes :)

  • So sorry you are dealing with such a difficult health diagnosis. But, I’m also excited to see you thrive and be more creative and passionate then ever. Life throws so many things at us and you have handled them all (from what you have shared!) like a champ. Sending lots of prayers and good vibes your way sister!
    XO
    Ali

  • Thanks so much for sharing about your experiences, Grace. And I’m so happy to hear you were able to get a correct diagnosis and find communities of support. I can only imagine what you went through. I went through a health scare last year that, like you, helped put a lot in perspective, especially with regards to work/life balance. It definitely helped underscore that without my health, without taking care of ailments and thinking both long-term and short-term, it is next to impossible to do a “good job” at work. It’s funny (and sometimes frustrating!) how setbacks or scary news can sometimes be the most clarifying experiences that help us re-prioritize and figure out how to be/feel better.
    And I can’t wait for the new podcast episodes!!

  • Grace, first, you are amazing. Seriously think about an insulin pump (Animas pumps are waterproof). It’s a GAMECHANGER. They seem intimidating at first but there’s so much support out there. Sending you so much love.

  • Hi grace. I’ve read this post almost without a breath, fascinated by how you’ve described your feelings and reaction to the process of finding out about your disease and this major change in your life. So honest, so truthfull to yourself… I’ve started reading your blog years ago, Internet was in its early years your blog was the first ever blog I encountered and it was a huge inspiration to me then. I started my own blog in hebrew and want through my own journey of finding and focusing what it us exactly I love to do… Thats what blogs allow you to do! Since then I admit I visited only now and then… And now I stumbled upon your instegram and decided to dove in. Surprised to read about something so personal and so different from what you usually write about. But I have to say, even after all this years you are an inspiration because of how you reveal not only what is shiny and perfect but also the imperfect and unclear and learning to except that… I can relate to so many things you’ve wrote about… I think it’s all about the process and enjoying the way of finding out things and that is what blogs are all about, so you have the perfect platform. Take care! Dana.

  • Thank you so much Grace for your strength and courage to share. First with Design Droits-Humains, your books and now your Type 1 Diabetes… You have illuminated so many and it is more evident than ever that you will continue to do so with every fiber of your being. xx Cat

  • Wow, thank you so much for sharing your story. I know much more about Type 1 now (plenty of type 2 in my family), and I appreciate the knowledge. It’s always great to read your writing, and to listen to your podcasts. I’ve been following DS since the early days and seen the changes (so many new awesome ones!); it’s also been an honor to join in your own story as you’ve shared it. It’s real, and absolutely inspiring. Thank you for creating DS and for being here.

  • Thanks for sharing Grace. I have been reading your blog right from the beginning. You are an inspiration. Dankeschön ;-)
    If your life ever leads you to Stuttgart Germany please let’s have a coffee ;-)

  • Thanks for sharing you story, Grace. I went through a similar situation in dealing with some serious health problems. I got mis-diagnosed a few times before settling on a couple chronic conditions and having my bloodwork reveal another one starting to develop. It was so hard, and I had many sleepless nights. I kept going to the darkest places in my mind and imagining my kids growing up without me around. I kept imagining not being able to be a grandma or travel or go on adventures. I had never felt so panicked and sad, my whole life changed quickly and I came to terms with my mortality and that I had taken feeling good and having a healthy body for granted. Many forums I read on the disease were very dark and just miserable. Thankfully, after a period of processing everything (it took a while as my diagnosis was up in the air- about a year) and meeting with many doctors (some awful, some great), I finally started to feel hopeful and positive and ready to take it full on and realize it’s okay for my life and health to not be perfect, my family will be okay no matter what. Anyways, I appreciate your sharing, I know when I was going through it all I felt crazy for reacting so strongly to the news, and I also felt so alone and that everyone around me was healthy. It helps to hear other people’s stories with health struggles. I wish you the best of luck and good health!

  • Boy, have you given me a lot to think about. I’ve been not sharing my diagnosis (16 years ago) with a lot of people as I just don’t want to be seen as a victim. I can handle the poking, the medications, the lifestyle changes – just not the pity, the dietary scrutiny, or constantly having to educate people who don’t have 2 hours to really get all the info they need to understand. So – I’ve become a bit of a porcupine. (I guess it goes along with all the needles?) Maybe a hedgehog – they’re cute, right?

    But with that attitude can come a lot of denial. It’s a fine balance of facing the changes you need to make, learning that new normal, and getting to the point where it’s a big deal, but you can manage quite well, thanks very much. And then keeping it up for the rest of your life. It’s very easy to back slide. Keep in touch with your doctors, do your tests, and don’t kick yourself for a less than perfect “score”. It really doesn’t do any good. Veggies. Veggies are good.

    I life in hope of magic, still. All the research, and the growing awareness of how our bodies and minds work, has resulted in such promising treatments and possible cures. If not for you and me, then for the generations to come.

    Hang in there, Grace!

  • Grace, I’ve been reading since 2008, I think.

    I rarely comment (if ever).

    But now, I want to thank you for keeping this place alive even through the tough times that you’re facing. It’s my oasis every single week. And you’re nothing but a role model, even if you don’t know it. Especially because you don’t know it, perhaps.

    Smiles :)

  • As always, thank you for your openness and candor. I’m sure it’s immensely comforting to those living with a chronic illness. And for those of us not yet affected by a chronic disease, one will likely come sooner or later. Because, as you say, change is constant. Sharing your story, particularly your initial grief and anger, is so meaningful for all of us.
    I’m sure your next chapter will be truly exceptional. We can’t wait to see what you do next with your beautiful life. Thank you for sharing so much of it with us.

  • Thanks so much for sharing your story! I am 13 years old and have had Type 1 since age 7; it’s so nice to know that I’m not alone! Just remember–your diagnosis does not define you or control you. Sending you strength and love!

  • Grace, I’m so sorry you’ve been having a rough time, but happy to hear you’re ready to tackle it and make changes for your health and happiness! I know you’re not near Boston, but Joslin Diabetes Center might still be a good resource for you in some way. My brother has Type 1 and has been going there since his diagnosis at 11 (over 30 years ago!). Just wanted to throw that out there because I’ve only heard good things over the years. Best of luck. :)

  • Thanks for sharing this! I am 26 and i have had diabetes for 13 years. it is a constant struggle and there are definitely days that are worse than others but when people like you share your story it makes it all a little easier :)

  • You are wonderful and an inspiration, and to the extent that those truths ever feel even the least little bit like pressure to be perfect, please know that they’re not. Even the very best of amongst us have those “worst version of myself” times. Even the best need a break, and time to recalibrate in the face of life’s shifts. You give so much through this site and your various projects, and show so much compassion for others. I know you know this, but I’ll say it anyways: be sure to treat yourself with compassion, and take what you need – help, time, space, whatever – on your journey forward!

  • Life is a funny thing. I too had a battle with my ow body but not with diabetes. It is still hard sometimes to accept that I can’t do all the things I want or do the same things as everybody else is doing but it also gave me a new perspective on life. It gave me the oportunity (actually it forced me) to think about my life and the things I really wanted. I couldn’t go to work anymore, so I started my own company, something I always wanted. For me it was a blessing in disguise, although I’m still hoping to be pain free one day. I really hope you get the same out of it. When our bodies function like they should it’s easy to just go and never really think about life. But now you had/have to. And I just know that that will change your life for the better, just like mine did!

  • Thank you for sharing this and I’m glad that this new normal is becoming okay. You can almost track your feelings with Instagram, your post have been much more joyous and light lately; #dspink. As someone with a chronic illness I can’t wait for your podcast! On an unrelated superstitious note your horseshoe is upside down.

  • Dear Grace,
    My son (29) was diagnosed a year and a half ago with Diabetes 1. A shock for everyone and a complete change of life which amazingly I can say it turned out for the best. Now he knows exactly what’s going on inside his body which as you say is the most incredible thing. Besides following his medical routines he adopted a most wonderful food regime. We as a family decided to do the same first of all as a way to support him but then we stuck with it since we saw how healthy we were all becoming. Please add this book for your collection: Eat to Live by Dr. Joel Fuhrman. You will be amazed by this. Thank you for sharing with us. Your way with words, your kind touch on all your posts make Design Droits-Humains one of my favorites.

    • Alejandra

      Thanks for the recommendation, I actually have that book! I haven’t read it, but it’s on my stack next to my bed ;)

      Sending you and your son a huge hug.

      Grace

  • Thank you for sharing your story. Life is a rollercoaster and it seems it has taught you, how to ride it. Pretty well! Enjoy every step of your new to explore paths. And never forget to dance.

  • Thank you, Grace. I’ve not been diagnosed with Type 1, but have been diagnosed with a neurological issue – I don’t even say the word. But, with your thoughts and reflections, I feel like I can do this. It’s just a new day and change can be good. It’s a wake up call. Joining hands with you.

  • I have been reading and been inspired by Design*Droits-Humains for YEARS, but I believe this is my first time commenting. I was also diagnosed with Type 1 as an adult, and so much that you wrote resonated powerfully with me. I had a similarly bleak post-diagnosis phase, but it’s been 7 years for me, and while it is still a disease that requires a lot of effort and attention, it’s gotten easier to deal with mentally and emotionally (usually). The Dexcom has been a MAJOR support for me – I hope you find it similarly supportive! I hope you continue to share as much as you’re comfortable with, since for me, reading blog posts by people with diabetes has been the most comforting and helpful part of managing life with D. (Also, thrilled about your podcast’s return!!!!)

  • Grace,

    I’ve had this open on my laptop since I read it yesterday morning.
    How you manage to share very personal things, when the time is right for you, in the way that is right for you is so inspiring, and is something that I respect you for immensely.

    I’ve struggled with what to type to you, and even though I’ve thought about it a fair bit now, I’m still fairly stumped. I’m genuinely sorry that your facing this health issue, that is likely life-long, and certainly life-changing.
    From what I know of you, I strongly believe you will do great, and find a way, that works for you, to work within some of he limitations Type 1 causes.

    I have been faced with serious health issues over the years… Things that have really interfered with how I envisioned my life unfolding, and most definitely changed the course of things.
    Feeling as though my life was coming apart at the seams due to unforeseen health problems, was the hardest thing I have ever faced. A true roller coaster both physically, and emotionally. And full of internal battles with my highly perfectionistic, type A personality.

    That said, I would never have gotten to know myself as I do now unless I had faced these challenges. I wouldn’t appreciate what I have today in the same way… I have grown so much as a person.

    On a happier note, D*S is seriously one of the things that helped get me through the most difficult times.
    If I was unable to get out of bed, or leave my apartment, I could (most of the time) manage to take a look at your site, and feel connected to the world. Being ill can be very isolating and the D*S community made me feel less alone. I know how cliché that likely sounds, but it’s true.
    Reading the blog everyday helped keep me going…

    Thanks for sharing.
    I wish you nothing but the best.

    Ash xo

    • Ashley

      Thank you so much for sharing your story with me. I’m so sorry you’re dealing with health issues, too. They can be so ta, but please know you always have support here.

      Grace

  • The best leaders (and mentors) are those that can step away and have confidence in knowing that your people will be great. By always surrounding yourself with talented, amazing people, you continue to produce content and connections that have always been exceptional. I love that designsponge evolves and produces features that are exciting and new. It’s what sets you apart. I can’t wait to see what this new chapter brings for you and your family, as well as the rest of us, who continue to be inspired by you.

  • Thank you so much for being so vulnerable with the world. I was diagnosed with Type 1 about 10 years ago (when I was 22). I found myself (and continue to find myself) falling into the “perfect patient” trap… having diabetes has taught me how to trust in a Higher Power, give up my perfectionistic attitude, and live in the moment. I don’t know how I would’ve learned these lessons without having a constant reminder of what I can and cannot control. But I think I’m a better person because of it. Again, thank you. You are not alone.

  • Grace, you continue to be an inspiration!!

    So excited for the podcast; if you need a photographer/Pinfluencer who suffers from rheumatoid arthritis and fibromyalgia, I’m your girl!

    And if you ever want to meet up in the city with some other “sick chicks”, I’ve got a great group of ladies that I hang out with!

    xoxoxoxo

  • Dear Grace. As a type 1 diabetic for 20 years, I understand deeply all that you’re going through. The first 14 years of diabetes I used needles and only when I switched to a pump I finally felt I was in control of my life instead of my disease controlling me. It was the best decision I ever made and I urge you to look into it. You’ll get used to it pretty quickly & there are various ways/ accessories to hide it for daily life. Wishing you all the best. Love your site!

    • Amy

      Thanks. I commented on this above- I’m not ready for the pump yet, but I’m sure it will be something I move to in the future. I’m still really struggling with feeling like a robot or like I’m “sick” when I have too many devices attached to me. I’m starting with a CGM next week and once I’m used to that, we’ll see…

      Grace

      • New here, but found out I was a T2 in 2001…what a terrible year. I just got the pump myself and a couple of meters so i don’t have to lug stuff around.

        KeysWalletPhonePumpMeter…etc…etc… is a bit much to carry around, so I keep one set at an office.

        Have to say the pump + CGM combo has been pretty good to me. I’d also look into the openAPS technology that really smart people are wiring up themselves. Basically a pump/CGM/Glucose system that runs itself and you monitor it on your phone.

        That community is really amazing and can probably use some attention from the design world. I really see the technology and wearability improving alot soon.

        Sounds like you have a great support system, and I have a strong feeling your going to do just well.

  • Thank you for writing about this so honestly; looking forward to reading/hearing more about this next chapter in your life – and PS I’d love to have you on my show sometime! I’ll reach out via email.

  • Dear Grace, Keep up the good work! Life is for living and diabetes is for managing. I was diagnosed with Type 1 almost four years ago, at the age of 50, just as I was retiring to open a cakery! In fact, the day my new professional mixer arrived, was the day I got the confirmation. Normally, I LOVE irony, but that one hurt! As I read your post, I kept having to remind myself that I had not written it. We even read all the same books. You will have good days and bad, just like before you had diabetes. I sometimes have to remind myself that, in the world of auto-immune disorders, things could be worse than T1D. With a little self control and an insulin pen, we pretty much know what to expect from our disease. After nearly 4 years, I am just starting to think about experimenting with a pump. Take your time. You seem to be pretty much rocking it. Which, considering what I see you say and do everyday on your blog and Insta, etc., is not at all surprising. Thank you for writing about this very personal topic. A rising tide lifts all boats, and you made a bunch of T1Ds feel pretty great with this post.

  • I read each and every word of your very open blog post about becoming a Type 1. I am the chief caregiver to my husband who was diagnosed in January of 2011. We both are stressed out adults who took on this disease full on! We eat sooooo healthy – due to our great Endocrinologist and now my husbands A1C is as low as a Type 1 can get! I cook each and every meal with LOVE and we rarely eat out. It wasn’t an easy diagnosis (sadly we’ve had worse) but we got thru and now it’s just part of our lives. Good luck and I hope you’re feeling well!

    • Jane

      Sending you both a huge hug- it’s no small job to be a great partner to someone with Type 1. We’re all lucky to have people like you in our lives. I know my life and my health would be a MUCH bigger challenge without the amazing support of my wife.

      Grace

  • Hi Grace!

    I’ve had T1D for 15 years almost (since the age of 12). I started wearing an insulin pump 3 weeks post-diagnosis and have also been wearing a Dexcom g4 lately.

    I also used to live in Greenpoint, work as a designer/art director, and definitely bought stuff at your moving office sale :)

    Feel free to reach out with questions!

  • Grace, what a gift that you have a community here to share in life’s challenges. I’m so glad to hear your health is your priority now, and that you’re in the position to make it so.

    If you’d ever like to talk about chronic disorders, I’m a writer, editor and journalist with a tic disorder, which is like Tourette Syndrome. It’s misunderstood and often mocked, but it’s a very real and at times debilitating daily process. Sometimes I think artists are the best equipped to deal with these trials because even though we feel so deeply, we have the desire to create something beautiful out of it.

    Wishing you the best.

  • Hi Grace! Welcome to the club no one ever wanted to join! I’ve had type 1 diabetes for 22 years and for quite awhile, I blogged about it. I’m glad you found so many great diabetes books (Gary Scheiner has been my CDE for awhile, and he takes remote clients if you’re ever interested in working with him).

    The Diabetes Online Community is also amazing, and there are many blogs like DiabetesMine, SixUntilMe, A Sweet Life… many, many real life personal stories. They may help too, if you haven’t already found them! It sounds like you’re transitioning really well and have tons of support and I’m really happy to hear that. Peer support has always been vital to me and I’m glad to hear you’re finding your own space in our tribe.

    • Allison

      Thank you so much! And no way, re: Gary Scheiner! That’s so cool! I didn’t know he takes remote clients- I’ll have to look into that. Do you know if he’s super pricey? I actually considered going to Dr. Bernstein until I found out he was $400 an hour with a minimum of a 3 FULL day-in-a-row appointment to start.

      Grace

  • Amazing for you to post this and take the time to be responding to everyone (and very thoughtfully correcting misunderstandings about T1D — that is a very special trait!). Almost 28 years ago, when I was 10 my doctor diagnosed me as Type 2 (oye), luckily quickly corrected at the hospital.
    The online community is amazing – sixuntilme and theperfectd are two of my favs, young women who although not recently diagnosed, do share really great perspectives on it, often with a sense of humor. I know there’s a ton of advice out there, but CGM if you can, for sure! It’s been a great extra piece of reassurance when traveling for work and doing long marathon-training runs, among other things.

  • Thanks for sharing this – it’s really inspiring to read. I’m a 29 year old designer / developer, self-employed with a chronic heart condition. It’s been a struggle at times, and I don’t always know how much to share with clients, or whether I want them to know at all!

    I tend to downplay it no matter what – I had to take some time off last year for a heart procedure, and went through a lot of anxiety about how clients would receive the news, whether they would keep trusting me with their business, whether they’d take their business elsewhere out of a misplaced desire not to ‘bother’ me… all in all, the surgery was barely a blip on my anxiety radar compared to my business!

    You’ve built something amazing here at DS, and simply having that team behind you to have your back when you need to take time or make adjustments is just one thing demonstrating what a great community you’ve made. You should feel seriously proud of that, and all you’ve achieved.

    Wishing you luck with your new life with a chronic condition, and also woo! Podcast is back! xx

  • Grace,

    I turned 40 this year and was diagnosed with T1D when I was 6 years old. Your post broke my heart a little and equally made me really anxious and inspired to re-examine my own disease. I’m embarrassed to say I’ve never read a single book you showed (and am also impressed by the stack!) and have not once thought of searching for a FB group or anything of the sort for other diabetics. Alas, my only expertise is having lived with this disease for most of my life.

    Unfortunately, like most things in life, there isn’t a perfect, one size fits all solution. I always say, diabetes is far from an exact science. But also, as you’ve learned, your body is amazing and you know it best. Don’t be too hard on yourself when it feels like you’re not getting it exactly right, because that simply doesn’t exist. You’ll have good days and bad days and everything in between. Emotions and periods and who knows what effect my blood sugars in ways I can never plan for.

    You seem to be well on your way to figuring it out. Thank you for reminding me what a gift my health is, even with diabetes, and my responsibility to it.

    xo,
    Kristie

    p.s. Unless you are flat out in love with your endo, go find one that will approve a pump asap.

  • Hi Grace,
    I am sorry to hear you’ve gone through a tough time and I’m grateful you have shared this with us. I so too wish sometimes time could stand still whilst I catch up on the many surprises life throughs at us.
    I have been a DS* fan for such a long time and it has been my “internet” anchor. Whilst many things online change, with new blogs, new platform etc, DS* has always been the familiar place to go to that constantly improves without losing its authenticity.
    Your professional & also personal adventures, challanges and successes have been inspiring me for over 10 years. I am looking forward to the podcasts and best of luck with the upcoming projects ahead.
    Lots of love from Dublin.
    Take care
    Nathalie

  • Grace,

    Thank you so much for sharing your story. I too am always wishing that things could just stay the same for a moment while I catch up but have been practicing swaying with the breeze and trusting myself that I can handle whatever comes my way. Over the years, this is something that your posts/interviews have encouraged me to do :) Congrats on finding a clear diagnosis and also having the courage to shift your routines and goals to accommodate this new lifestyle, I have no doubt you will do great things. Excitedly looking forward to watching it all unfold!

    Much love,
    Nicole

  • Best of luck to you on adjusting to your new life, Grace! I have a friend who was diagnosed with Type 1 at a young age. She has a very full life, a great career, a young daughter, and an insulin pump. There are definitely hard days, but she really integrated her food tracking and everything so seamlessly. Kind of like when you first start driving and checking the mirrors and your speed and the gauges is so overwhelming, but then it just becomes integrated into your brain and you don’t even have to think about it. And I think it’s so good that you “went there”. So many people don’t, but it can be so cathartic in the end and really helps you grow. What seems like a breakdown to some is actually the bravest thing you can do, feeling your feelings and addressing them. I look forward to seeing what your new endeavors look like!

  • Hi Grace,

    Thank you for sharing your diagnosis and journey. There may be ups and downs, but it sounds like you have a good support network and outlook, which are both vital to keeping happy and healthy. Three cheers to your loving support people and especially your wife.

    I’ve been enjoying D*S for several years now as well as your podcast and I look forward the continuation of both! D*S brings a unique voice to the world of design and the strengths (trials, tribulations, head-space and perspectives) of female entrepreneurs. The Life & Business section is seriously one of my favorite things online.

    By total coincidence of the interwebs today, I happened to read this story about a woman with T1D who hacked her CGM to work with her Insulin Pump: Might be worth a look.

    – Anwen

  • This really resonates with me. I was diagnosed with lupus two years ago, and I’m still trying to figure out what this means for my life. This- “I’ve come to accept that this could be an invitation to one of the brightest and most meaningful chapters of my life”- is just so uplifting and hopeful for me. I’m not at that point yet, but maybe I could be.

  • Hello —
    Really a great post — you’re a strong and brave woman! And, what courage to reveal your fears — and hopes — to everyone. You’ve got a huge support system in all the readers who have come to know you through your writing — I really hope you can draw some strength from all of us knowing that we want the best for you.

    Someone told me that you might be looking for other women who are artists or designers who are living and working with a chronic disease. My friend, Fran Shea, runs a letterpress business – Zeichen Press and she has been dealing with MS for 4 years. It hasn’t been easy but she’s kept her sense of humor (it gets dark sometimes) and has continued to create and promote her cards. They’re sold all over the US and even in New Zealand. Like you — she’s brave and faces her disease with determination and strength.

  • Dear Grace,

    Thank you for sharing your story. I’m always so grateful for people brave enough to talk about their chronic disease(s) in an honest, open way. I’ve followed your blog for years (sometimes, it’s felt like my home!), and am happy you’re creating space for growth and health!
    Wishing you lots of joy in this new chapter,
    Tierney

  • Hi Grace,
    I’ve been a daily ds reader for about 10 years and I am always so impressed with your thoughtful sharing particularly at the junctions in your life that are challenging. Thank you so much for your hard work and for creating a site that really feels like a ‘home’ to many of your readers also. Sending good vibes as you continue to navigate this new challenge, Anna Marie

  • Hi Grace,

    I am so sorry to hear about your diagnosis. I am a metalsmith and I was recently diagnosed with a whole slew of allergies including allergies to various metals. I have since cut back on production and figured out a level of work that works for my body…and I am jumping into other passion projects to make the most of the changes my body is asking for. My husband is a type 1 diabetic and I am constantly inspired by the way he pursues creativity as a priority, despite the daily struggle with sugar levels. He composes music for TV and for his own music projects. He lets the struggle drive him rather than hold him back, and I am so happy to see you doing the same. It is indeed a new chapter and one in which you can get to know your body and dreams even better. Best wishes to you for health and realizing those dreams!
    Lots of love!
    Nikki

  • Oh Grace…

    Wow…can I ever empathize with this post…what a relevant, timely, and heart-centered community share. I have enjoyed D*S for years, but tend to keep a low profile online as I’m “electronically shy” (!!!). However, your recent diagnosis and disclosure prompted me to put my fingers to the keyboard, lay my e-shyness aside, and offer up a comment.

    I was diagnosed with T1D this year (March 31st) at the age of 39 (…accompanied by hospitalization due to DKA). Finding my “new normal” (#newnormal?!!) is proving to be quite the experience! I come to this diagnosis as a queer, female-identified person and a “recovering” perfectionist/Type A human who has a history of disordered eating. Suffice it to say, your post really resonates with me in several fundamental ways. Please know that I am grateful for your generosity of spirit in sharing your experiences.

    These days, my mantra is “What do I need to know and do today to be well/my best self?” I figure I have a lifetime to become an expert…so I am finding that focusing on the now/my day-to-day learning helps me keep things in perspective and allows me to maintain momentum and move forward in the face of it all. I’m looking at this as an opportunity to get to know my body in new ways and to be more creative with cooking – one of my favourite things to do!

    I hope all goes well with the CGM – I’d love to try one as I think it would be so helpful during this initial learning curve (and moving forward)…but they seem a bit tricky to access in Canada. Still, I am definitely crossing my fingers and hoping for positive outcomes!

    With appreciation, respect, gratitude and wishes of the best possible unfurling and learning and thriving in this new normal…

  • Dear Grace,
    Thank you for sharing your story. It’s not easy being diagnosed with a disease and especially to share it openly with everyone and stay so positive. I have followed your blog for several years and always find it inspiring and interesting. I wish you best of luck with your future plans and healing.

      • Well, add me to the list of adults who got T1D post-30. I was 31 and people constantly assume mine was a T2D diagnosis (nope… I don’t fit any of those categories, and stop sending me links on how to “end” diabetes, I will always need insulin!)
        I love my endocrinologist if you need a NYC based doctor.
        Surprised how many of us there are…

  • Thanks once again for sharing your heart, Grace. I love that the beauty here goes all the way through. As a cancer survivor who comes here for my regular beauty fix (and have for 11 years!), I need to look at pretty things. They’re important–for all of us, but especially those of us who have lived through the gnarlier stuff. What I love just as much is knowing there’s a beating, human heart behind the D*S universe that’s struggling too, yet is as inspired as I am by gigantic peonies, handmade objects, and pink. Blessings on this part of your journey. xo

  • You are incredible Grace! I have been reading DS for 7 years and for me it’s a safe space that makes me happy even when everything around me is gray. Thank you for sharing your positivity and beautiful outlook on life.

  • Hi Grace, I’m a big fan of your blog, I’m a photo stylist in Portland, and I’ve been Type 1 for 25 years. Thanks for sharing your experience, it is so important to have a community with other Type 1s! I recently started a meet-up group to connect with others, and we all love it. I’m curious what Facebook groups you have found? One thing I have incorporated into my management recently, with the help of a counselor who is also T1, is using mindfulness-based techniques to help manage blood sugars, deal with fear of lows, handle stress, etc etc…it has been an incredible tool and has been life changing. I’d be happy to talk if you want! Cheers to you and thank you for being an awesome T1 role model! -Anne

    • Anne

      So nice to hear from you. I’m a part of a few FB groups, but my favorite is a T1 Athletes group that makes me feel so empowered, which is exactly what I need right now. I felt so sick and weak (mentally and physically) when I was diagnosed and feeling STRONG has been helpful to me.

      I took a mindfulness meditation lesson mid-way through my process and I agree- it’s so helpful. :)

      Sending you a big hug!

      G

  • Hi Grace,
    just read this now. My dad got diagnosed with type 1 in his early thirties. He’s 72 now, and the last 10 years have been the healthiest in his life. He gets regular check-ups for his insulin levels and eyes, of course, but type 1 does not have to mean a short and health problem-riddled life. Just more awareness, maybe? I hope the same for you.
    When I was young he sometimes let me give him his insulin shot in the morning, it fascinated me to no end ;)

    • Annemarie

      I’m so sorry to hear about your father, but SO happy to hear he’s happy and healthy. That’s so sweet that you would give him his shots sometimes. I have to admit the shots were the worst part for me at first and now they’re a no brainer. I finally got over the hump of the shots making me feel like I was sicker or weaker and now they make me feel like I’m stronger. “Look at what my stomach can do/take!” is what I try to remind myself. :)

      Grace

  • Private Facebook groups are the best! There are some amazing women I get to talk to in mine. It is the best thing.

    Thank you for sharing this part of your life with us. I used to think I was laidback, but when it comes to stuff like this happening, I realized I am Type A too and I was just kidding myself. I can’t control LIFE and when something happened to me that felt like I had no control, it was a horrible, terrible feeling. Breaking things down into how to approach a problem is what keeps me from freaking out completely, and just reading this post and how you have begun to do that.. I just want to say I’m sending mental support.

  • Grace,

    A friend (who said she has emailed with you) pointed me to your essay after I shared with her that I, too, have just been diagnosed with hypothyroid and Type I diabetes. One of the points you made that resonated with me is wanting to connect face-to-face with people. Social media has been a lifeline for me for so many things over the years, but I have found I just don’t want to talk about diabetes online. Eye makes a world of difference; you get better questions and can provide better answers. For that reason I’ve told my staff (in case anything should happen to me, and also why I’m no longer indulging in birthday cake :( ), but have to wait another two weeks till I see my best friend to tell her in person. Regardless, a huge thank you for documenting what I have been going through the past couple of months!

    Jennifer

  • Grace-welcome to the T1 club! I know this is a bit of an echo chamber, but thank you for writing so candidly. I was diagnosed in 2002 at 11, yet still remember the difficult emotions the first year. While the age difference is stark, know that many of us have experienced the same joys and devastations.

    First and foremost, I’m thrilled that people in your life are supporting you. After many years of diabetes burnout, the diabetes online community (DOC) and the right partner finally encouraged me to take back my life. It’s truly amazing what a little support can do. I encourage you to visit reddit.com/r/diabetes for the amazing group of people that continue to inspire, encourage, and laugh with me.

    As to your Dexcom, this tape is AMAZING to hold your site down, even through swimming and hot summers: . When you need to get all that tape junk off, then turn to: . You’ll thank me later.

    Last but certainly not least, my favorite tasty, portable, will-last-forever-in-the purse low blood sugar snack: .

    You’ve got this!

    • Kate

      Thank you so much for your kind comment!

      I’ve been using GriffGrips and hot pink (yay!) 4″ athletic tape to keep my Dex on so far and it’s been great. But these clear ones will definitely come in handy, thanks!

      I looove those Annie’s Bunnies. Not sure I could stop at just a few of those. Gummies are my weakness ;)

      Grace

  • FINALLY, SOMEBODY ACTUALLY “GETS IT!” I was diagnosed when I was 32 and three months after a gastric bypass. I, too, didn’t think adults could get Type 1…much of what you have written, I have experienced. One thing I found has helped me feel a little bit like my old self is wearing an Omnipod insulin pump. You take them off every three days and replace it with a new one and it’s controlled with a PDA. I am in the process of getting a Dexcon and am very excited about it! Too many hospital visits, too many times in DKA, too many of too many! Good luck to you and I hope you know your post hit me right where it needed to…thank you!

  • Grateful I came across this post, I was diagnosed with T1D almost three months ago now spent the fist 30 years of my life what I considered to be pretty healthy and active. I have been feeling like a crazy person, my unpredictable energy and fleeting emotions.

    Any of the other books in your pile there must reads? Im going to order think like a pancreas right now!

    I can relate so much to what you went through and that is so comforting. I think I’m going to go walk my dog right now :)

    Thank you.

    • Hi Cheylene

      Sending you a huge hug, my story is very similar and I know how you feel. The unpredictable energy part has been really, really hard for me- and emotionally ta. Mine is probably related to my additional thyroid problem- have you had your levels checked? My thyroid seems to be going back and forth between over and under active- it’s a real pain in the butt.

      Think Like a Pancreas is by far my favorite, by far. “Sugar Surfing” is also helpful and positive.

      My biggest help honestly has been the T1 Athletes Facebook group. Just request access and they’ll let you in. It’s a super positive and helpful group of people making active lifestyles work with T1.

      Grace :)

  • I am new to your site(yeah I know?) I was diagnosed with Type 2 diabetes in my late thirties. I am now in my late fifties. I became insulin dependent about 10 years ago after not taking care of myself. I was in denial for a long time, and then like you my A1C came back at 13. I cleaned up my act, eat a lot of plant based foods exercise and now in really good health. You just have to keep plugging away at it every day. Life is wonderful and diabetes is doable. The disease sucks but there is so much help available now. I know you know this but you will be fine.

  • I was just sent this article by someone in a Facebook group – and can relate so much. I was just diagnosed Type 1 last October at 32 years old – I went into DKA. Thanks for sharing this publicly. I have been hearing more and more of late onset Type 1 and it’s great to read other’s experiences.

  • I’ve been reading DS since 2006 and have loved every iteration of it. The deeper you go with design, life, home, etc, the more I can’t wait for each time I check in! You are so strong, and I love the way you’re looking at this diagnosis as a new chapter and a new call to be your best self, rather than an unrealistic ideal.

    I’m so excited that you’re bringing back the podcast, too! After the Jump is such a huge inspiration, I love the the conversations you have there. I still re-listen to my favorite episodes all the time. I’m sure you already have your artists selected for your first arc, but Emily Barletta is definitely someone who you should check out if you haven’t already :)

  • I’m a little late here, but wanted to let you know about my mum. She’s had type 1 diabetes for over 40 years (she was 20 when she was diagnosed). Sometimes she eats chocolate. She had an issue with her eyes that required some laser surgery but a good diabetic specialist will ensure that any eye abnormalities never get severe enough to cause any kind of vision impairment, likewise with nerve damage. By the time you’ve had diabetes for long enough for any secondary issues to take place they’ll probably have found a cure! Oh, and she had me at 31 – I was a pretty huge baby (it happens with diabetic mums) but she managed to keep her blood sugars relatively stable and raise me for 18 years. Okay, 32 years. She’s still raising me haha.

    So sure, it’s a total bummer having to give yourself shots multiple times a day, but it’s not going to get in the way of your life if you don’t let it. My mum’s a testament to that.

  • Like Nic I’m latecomer to your beautifully honest and considered post.

    I can really empathise with you in terms of the emotions you go through when receiving a life-altering diagnosis.

    Born with hearing loss I’ve only ever known life with hearing aids and find it completely normal that my hearing trails off every 5 days and needs a new battery to get it up and running again. Being part robot in this sense is great for me and enjoying being able to literally ‘switch off’ when on the train to work.

    My hearing loss never bothered me because its always been that way. It’s when things change that it’s tough.

    I was a very active child doing 5+ sports a week but slowly started dropping activities because I felt so tired all the time. I blamed myself for being lazy, my mum left me in tears at a trampolining class once because I just felt incapable of doing ANYTHING. I was sleeping in till early afternoon and it got so even walking up the stairs felt like too much.

    After developing another severe and rare symptom I was diagnosed with a severely under-active thyroid and will be taking pills to regulate this for the rest of my life.

    You eventually work through all the problems and emotions and stabilise and continue. I then got hit with another life altering diagnosis – a very rare condition called Usher syndrome.

    It turns out my hearing loss is actually a part of Usher syndrome combined with it’s sister condition Retinitis Pigmentosa meaning that I am also now slowly losing my sight.

    I was diagnosed aged 16 and I’ve always been a very driven creative person and had planned to go to uni to study fine art. This was such a horrible time for me. I felt like I should study something else sensible that I could do with sight loss.

    I’m so glad I didn’t give in to that feeling.

    Instead I switched to Silversmithing, Goldsmithing and Jewellery Design and graduated with 1st class honours. I’ve worked at the bench for an internationally renowned jeweller and now as a jewellery and luxury goods designer for a prestigious company in Mayfair, London.

    I won’t be able to do it forever, I’m now 27 and each year it gets that little bit harder. But I love my work and treasure each and every time I get to design something unique and beautiful that someone else will appreciate.

    One day I’ll have to switch tack and I hope I will find as much opportunity and fulfillment out of whatever the next chapter holds as the last one has.

  • Similar story to Nic’s. My mom has had Type 1 Diabetes for almost 60 years now (she got it when she was 8.) She had me (a whoppin’ 9 pound baby) at 37, and still has all of her limbs and eye sight, and the energy of a 21 year old.

    Now don’t get me wrong – she has had blood sugar episodes for as long as I can remember, but she’s prevailed by staying knowledgable about her disease (she pursued a career in educating family members of her diabetic patients) and most importantly, letting the people around her take care of her. She sat me, my sister, and my brother down when we were very little and told us how we can know if her blood sugar is too low, and what we can do to help her. That’s right – I knew how to test my mom’s blood sugar as an 8 year old.

    I wanted to share my and her experience with the disease, because I think of it as a very positive thing. And I hope you can take a little piece of encouragement from it.

    Sending so much support and love from San Francisco!

  • Thank you for writing this! It’s hard not to feel so low sometimes with Type 1, I’m going to look into some of your books you took a picture of :) you’ve inspired me :)

    Angela
    Ps. You’ve figured out how to be in control, just keep reminding yourself when times are tough and you’ll get through. I try to take my own advice most days ;)

  • Hi. I just heard your podcast on grow big always and appreciated what you had to say about diabetes. I was diagnosed t1 at 30. I not only am grateful that it came at a stage where I was mature enough to make good decisions (and that my mom didn’t have to deal with it) but also that I could find some blessings in it. It totally sucks but have you ever watched a scary movie or undergone a stressful situation while wearing a cgm? It’s like eating a bowl of sugar. I used to be a lot more anxious but because I could see how it effects me I can let most things pass without getting stressed about them. If I’m going to mess up my blood sugar it’s going to be for a chocolate chip cookie not because of some day to day bs. I’m 8+ years in. I had a baby, I nursed him for almost three years. I work full time. All of that is impossible. So is managing t1d but you do it because there is nothing else to do. Good luck.

  • I am an artist and illustrator. Design Droits-Humains starting following me on Instagram and I was so encouraged. I posted an illustration today about hope because my 17 year old son was diagnosed with type 1 diabetes 3 weeks ago. Someone liked my picture who was followed by you. I ended up finding this article. My son is handling it well. It is a hard diagnosis and came as a shock. It is encouraging to find so many people living successfully with T1D. Thanks for sharing your story and continuing on with Design Droits-Humains.

  • Thanks for this honest and generous article. My 18 year old son was just diagnosed with Type 1. He’s just come home from three days in the hospital. Caught early, but still a struggle to get his levels right, and he’s already experienced some frightening moments.

    He went from being a busy, very self-motivated teenager – leaving high school with top marks, heading to uni in Sept, managing and performing in two bands, taking on a full-time summer job, to a terrified child in the blink of an eye. He’s going through the initial stages you experienced. He’s due to play Glastonbury Festival in a couple weeks, a dream for every British musician. Hopefully, his “new normal” will feel normal soon and music will once again take center stage in his life, instead of his numbers.

    It’s only been 5 days, but it feels like months. His body is just starting to accept the insulin, he’s feeling physically less strange and mentally a little less anxious. Baby steps, but giant steps too.

    From an exhausted Mom, thanks for your words and recommendations, they are much appreciated. Going off to get your top book choice now.

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