1. Do you have a primary diagnosis, if so, what is it?
A: Yes - Type 1 Diabetes. I was diagnosed a month after my 7th birthday in 1999.
2. How long did it take you to get diagnosed?
A: The timeline for how long I was ill with undiagnosed type 1 diabetes is unknown, but based on the information I know now, it was most likely a handful of months. Diabetes does not run in my family, so my parents had no idea I was exhibiting the symptoms for it (I.e: losing weight, drinking and peeing constantly, mental fog, no energy, etc.)
For the folks who don’t know, Type 1 Diabetes is an autoimmune disease whereby your immune system attacks the insulin producing cells in your pancreas, known as beta cells. Without insulin, your body can no longer regulate your blood sugar levels. Type 1 Diabetics must take on the role of the pancreas and administer insulin injections and consume glucose when needed in order to keep their blood sugar in range. The long-term side effects of fluctuations in your blood sugar is grave – neuropathy, retinopathy, kidney failure, heart disease, amputation, the list goes on…This is why it is so important to try your best at keeping your blood sugars in range as much as possible.
If it weren’t for my grandfather, I wouldn’t be here today. I ended up getting diagnosed because I spent memorial weekend with him and my grandmother, and he immediately knew something was wrong. He had worked in the healthcare industry for many years before retirement and was aware of the symptoms of diabetes. After spending only a few hours with him, he told my mom I needed to be taken to the ER right away.
I was diagnosed at Children’s Hospital of Philadelphia with a glucose level of 944 - the non-diabetic and healthy range is 70-110. I was on the verge of a diabetic coma and the doctor even told my parents there was a chance I could go into cardiac arrest while trying to bring my glucose levels back down. It’s been almost 19 years later and I am happy to be alive and doing well!
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: I was so little that I didn’t fully understand the magnitude of living with a chronic disease. I remember feeling scared that I would need to take insulin injections and prick my fingers for the rest of my life, but it wasn’t until I reached high-school when I started to acknowledge how mentally and physically draining living with a chronic illness is.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Don’t give up – continue to search for answers, even when you feel like you aren’t getting anywhere or making progress.
5. Has your chronic illness changed your perspective, and if so, how?
A: 100%. Living with diabetes has made me a very empathetic person, and I certainly look at life differently because of it. I have a great deal of admiration for people living with chronic diseases and do not take a single day for granted.
6. What moment are you most proud of in your chronic illness journey thus far?
A: I’m proud that I’ve lived my life without allowing diabetes to get in the way or stop me from doing what I want to do. One of my proudest moments was last May when I completed an 11 hour, arduous and cold hike in Norway. I was able to keep my blood sugars (relatively) in range and have never felt braver, stronger, or more confident in myself then I did when I completed the hike!
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: I don’t think I’ve had one defining moment that was my hardest mentally or physically during my journey with diabetes. Instead, the hard times come in waves. I’ll go from feeling optimistic and upbeat about managing my health for a period of time, and then go into a phase of “diabetes burnout”. Diabetes burnout is when a diabetic feels overwhelmed or depressed about the incessant management of this disease that they no longer take the proper steps to care for themselves. Type 1 diabetes is 24 hours a day, 365 days a year. There is not a single day where you can put it on the backburner for a few hours and completely forget about it – it is all consuming and relentless, so it can be difficult mentally to stay positive at all times.
8. What or who has helped you the most during the lowest days?
A: The diabetes online community. I’ve always had a great support system between my family, fiancé, and friends.. but the people I’ve connected with online who are going through the same obstacles as me are who I gain my strength and willpower from. I created a diabetes specific Instagram account almost 2 years ago (@type1none) with the intent on raising awareness for this highly misunderstood disease. I never thought I would have made so many virtual friends who encourage me and make me feel better on days when I am struggling or feeling alone.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
1. Connect with people going through the same thing. Whether that’s online or through support groups, you should try and make an effort to find people who truly “get it”. I went 16 years without knowing anyone living with Type 1 and I cannot articulate how isolated I felt. As supportive as friends and family can be, it is a totally different experience connecting with people who are living with the same condition as you. It makes the day to day so much easier.
2. Do not feel embarrassed by your medical devices. Wear them with pride and take care of yourself. I used to purposely take off my insulin pump before going out at night to parties in college because I didn’t want people looking at me differently or asking what it was. I just wanted to fit in. I look back on those days now and it makes me sad that I put other people’s potential judgement or comments above my own health.
10. What would you like the world to know about life as a chronic illness patient?
A: I would want the world to know that diabetes does not define me, it is simply a part of me. Sure, living with it makes ordinary, everyday tasks much more difficult at times, and it weighs heavily on my mind, but I am stronger for it! One of my favorite quotes is, “You were assigned this mountain to show others it can be moved”, and that’s exactly what I intend to do!
By Moira | @Type1None