When we hear powerful voices across the diabetes online community, or (in the days when) attending diabetes events, we more often receive perspectives from people who have become ‘advocates’ in their own way through the experiences of being diagnosed with type 1 diabetes, from parents who work tirelessly to take on the responsibilities of this condition with all fears that come with it, and health professionals and researchers working directly in diabetes care. We don’t too often hear from the siblings, who are every bit as closely impacted and engaged in life with type 1 diabetes when growing up with the condition in their household. Cue… Josie Clark from Chicago, who has volunteered with her family at events such as Children with Diabetes, and engages online with the likes of Beyond Type 1. In this #DiAview, we hear from the ‘Sister Action’ taken by Josie and her perspective as a T1D family member:
1. Coming from the siblings perspective in this, what does the word ‘diabetes’ mean to you when you hear it?
“The word I associate with “diabetes,” is strength. A few years ago if I had been asked that question, I probably would have said that word made me think of this treacherous auto-immune disease my sister, Jeanmarie, has to live with. I see her struggles and pain every day, but it has made me realize how capable she is, and others whom I love with this diagnosis. Too often, I feel like we focus on this “why me” mentality, and forget to appreciate how much courage it takes to deal with such a demanding aspect of life.”
2. Can you share a bit about your family story when Jeanmarie was diagnosed – how much of a shock was it for you all, and how would you say everyone reacted in your household?
“I remember getting a call from my older brother immediately after school in eighth grade. My school was only two blocks from my house, so I quickly walked home to see my brother and aunt Suzy on our front porch, who had explained my mom and dad were with my sister at Lurie’s Children’s Hospital. Jeanmarie actually went to the doctor just for a regular physical. A few months prior we were on vacation, and she had exhibited the common signs of major weight loss, excessive thirst and urination, and worsening vision. We honestly didn’t think much of it, but my mom mentioned it to her doctor just in case. After a simple blood test, they were informed the hospital had already been called because her blood sugar levels were over 700 mg/dl (over 38 mmol/l).
It was definitely a huge shock to my whole family, especially since we’ve had absolutely no history of Type 1 among us. The first couple days in the hospital, it felt like we were just having tons and tons of information shoved down our throats, which I know a lot of other diabetes families can relate to. I noticed my parents became a little more protective, and rightfully so. Their youngest child had just been diagnosed with a life-long autoimmune disease that could determine life or death within a matter of minutes. I feel like a lot of people don’t understand the extent of that sentence, which can be very frustrating for families of diabetics. My brother and I of course became a lot more open-minded. Diabetes isn’t just injecting, testing, bolusing, calculating, etc. Diabetes is unexplained sky-high numbers or plummeting lows. Diabetes is frequent and uncontrollable mood swings. Diabetes is your little sister being too afraid of sleepovers for years, and missing out on fun experiences with her friends. Diabetes is irregular menstruation, connections to other autoimmune diseases (in Jeanmarie’s case, Hashimoto’s), dry skin, bruising, constantly having to educate friends and family, and so much more.”
3. Sometimes there can be areas of divide between siblings, particularly when growing up with a condition like type one in the house and all the unwanted attention it can bring. Did you experience any challenges around this?
“Personally, I feel like I had to grow up a little faster than most. I was raised in the city of Chicago with two siblings with disabilities, even prior to Jeanmarie’s type 1 diagnosis. For example, both my siblings wear hearing aids, so at summer camps or school, I could be found talking to the teachers or counsellors after class explaining their hearing loss and what could be done to better assist them. Advocacy is so important for any disability. The more you educate people, the better they can understand and help you, and others after you. I never felt like the one who was left out from the attention in or outside of the house, because it had always been the reality for me. And to other siblings of type 1 diabetics, listen to your parents: they do not love you any less, but sometimes your sibling needs more support with things you are capable of doing yourself! Try taking the weight off your parents shoulders and see what you can do to help, too.”
4. You are now actively involved with not only supporting your sibling, but also other people in volunteering in this cause. Can you tell us a bit about what motivated you to reach and speak to others about diabetes as a sister connected to it?
“Sadly, type 1 diabetes isn’t talked about even close to enough as it should be. I remember my sister immediately searching up type 1 on Instagram and other social media sites, finding our favorite influencers like @glitterglucose, @thesweetlibrarian, @maryalessandraa, @ehmichelle, and so many more. I don’t think she’d be nearly as okay with her diagnosis if it weren’t for people like them who show what it’s really like to live with type 1. It’s not all sunshine and rainbows, but it gave her the reassurance that you can absolutely live a normal life again. This inspired me to help bring that courage to others and family members I knew. My freshman year of high school, one of my friend’s little brother’s had just been diagnosed, and went to me for insight. I felt so honored to be able to talk her through insulin delivery options, different types of CGMs, and overall let her know that everything would end up being okay. It does take a little bit, but you learn from mistakes, continue doing what works, and things unfold the way they’re supposed to. I know how scary it is to be in that first-few-days-of-diagnosis stage, and I wanted to talk with and help anyone I could who was going through that. I frequently post diabetes warning signs, misconceptions, and other useful information. My family and I actually attend a type 1 conference in Orlando, Florida every year called “Friends for Life.” After visiting the Beyond Type 1 booth and seeing my sister’s love for advocacy, I was asked to be a moderator for their app. I was absolutely over the moon to have a platform to talk to people affected by diabetes directly from a unique perspective. I’m so passionate about helping people, and I plan on continuing to do so until a cure is found.”
5. Would you say that in your family you found a way to grow closer together with this diabetes challenge in your lives? What have been both the harder parts and the positive parts from your view?
“A thousand percent I think our family has grown closer, especially between us siblings. I don’t think it’s possible not to! That’s of course one positive that came through this diagnosis. The only real problem that comes from this, however, is everyone has a different way of doing things. When my siblings were younger (come to think of it, even today), my parents would tell them “you’re the boss of your hearing loss!” Ultimately, my sister is the boss of her diabetes as well. She makes her own decisions about bolusing, what technology she uses, and other important decisions. It definitely would give my parents more peace of mind if she were back on her T-Slim pump, but at this point in her life, she honestly prefers giving multiple daily injections, and that’s up to her! That’s a line we don’t really cross in our family, giving her the space and respect she needs as a teen with type 1.”
6. What would you share to other siblings or families going through this with a family member being diagnosed with t1d?
“I promise it gets easier. You learn which devices and techniques work for them. You shorten up the speech you have to give your family every year at Thanksgiving. You become reassured that they are able to handle a lot of this on their own. I know type 1’s who have lived with this for over sixty years; you just have to get the hang of things! And even more importantly, get involved. It is so much more eye-opening to see that other families go through the exact same struggles you do, and know you are NEVER alone. Conferences are life-changing. At Friends for Life, we learn something new every single year, and meet so many incredible people. My sister even met one of her best friends there! Create an account on the Beyond Type 1 app! People share celebrations, ask questions, can join groups, have meaningful and educational conversations, and can even message each other or moderators like myself! There’s even an entire babysitting service for people qualified to care for t1 diabetics called SafeSitters that I’m a part of. You can sign up as a parent, or sign up as a babysitter and list your qualifications and experiences. Living with type 1 isn’t easy, but there are so many ways to lighten that weight off your shoulders, and so many people who will treat you as family as soon as you say the word. You will get through this.”
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