This is what it's like to be diagnosed with T1D when you're 65
Yolande Mistri was diagnosed with type 1 diabetes when she was 65 years old. She shares her story with Nupur Lalvani.
When were you diagnosed with type 1 diabetes? What were your first thoughts & questions?
I was diagnosed when I was 65, I am now 73 years old. I did not see this coming, infact I didn't even know there were different types of diabetes. Call it ignorance if you will. I learn something new everyday and I'm reminded of the fact that I have to get my act together and keep improving. I tell myself everyday, "Yoli you can do it!" and I have no doubt that I will!
Getting diagnosed with type 1 diabetes at 65 years of age, as I soon realised was pretty unusual, even for the doctors diagnosing it.
I'll never forget the night my life changed. I was actually misdiagnosed with type 2 diabetes (quite predictable, in retrospect) and after a whole year of trying to treat type 2 diabetes and losing 20 kgs of weight, I finally decided to seek a second opinion because something didn't feel right. The new doctor actually tested my GAD antibodies and I finally had a new diagnosis of type 1 diabetes. I wasn't ranting or raving, I was pretty chilled, I knew I had a lifetime of yoga behind me, I was fit and healthy. As for the diagnosis, I thought it is what it is and I'll figure it out.
Tell us a little about yourself
I grew up in England (went to boarding school there) and lived in Europe and the United States for a large part of my life. We returned to India some years ago and have a peaceful life here in Goa, I'm no city girl. I've been a yoga teacher for many years and I have always been spiritual. I would credit spirituality and the time I spent at the ashram for the mental strength to hold up and deal with life's adversities. I met my husband in Europe, we married and have 2 kids and a grandchild. The interesting thing is my 8 year old grandchild has a T1D friend at school, so I think he has a closer understanding of what T1D means.
How did your close ones take it? Was it hard to explain the diagnosis to friends & family?
Not at all! The first person to know was my husband and he jokingly pulled my leg saying "your diagnosis is the best thing that happened, your food habits will improve". At first neither of us really 'knew' what type 1 diabetes is, you know? Also I was misdiagnosed as type 2 and thought all my chocolate eating days had finally caught up with me. Silly me, now I know better. Type 1 diabetes is an autoimmune condition and you need to take insulin injections everyday. This is very different from the more commonly known type 2 diabetes, which is often a lifestyle disorder and may be controlled by oral medication. Other family members and friends were concerned and sorry to know about the diagnosis, but predictably most people don't know what type 1 diabetes is about at all! My sister-in-law knew about T1D and was very concerned. I realised my reactions to my own diagnosis also impacted other people's reactions to me.
I am a practical person and took it as it is, calmly.
What challenges do you face? How is living with T1 more difficult for older folks?
I feel pretty lucky so far. At first I didn't like to be told what to eat or do by folks when they heard of my diagnosis. A T1D diagnosis is pretty life changing; I had to learn to be very aware of how every little thing impacts my blood sugars. Pre diagnosis, I wouldn't think twice before chugging down juice, for example, but now I have it only when I'm low or I really want it. I'll be honest, the food policing did annoy me a great deal. I also knew that most family and friends meant well, they probably just didn't know enough and reacted in a way that might be 'caring' for them but could be offensive to me. Eventually, I realised I can't blame people who don't even know that there are different types of diabetes. While all of this was new to me, it was also new for them. Whenever someone asked me, "can you eat that?" or "diabetics shouldn't eat these things", I didn't take it personally, I just let it go, I ignored it. Later as I began to get used to my new normal, I also started educating people around me on what type 1 diabetes is, why I need to test my sugars and take a shot before each meal, why I may need to eat something sugary when I'm in hypo and also why I can eat what I like because I'm in charge of my health, not them.
As an older person living with type 1 diabetes (I'm 73 now) probably the learning curve was a little more steep. Basic things that you may take for granted when you're younger, could become challenging as you age, such as mobility or sight. I have always been very fit and active, I've been a yoga teacher, I love dancing and going on long walks but I've had some hip pain over the last few years that makes it difficult for me to walk. I still swim though. Not exercising was never an option.
As an older person, understanding diabetes technology isn't terribly hard if you have support and knowledge. I'm on MDI and I use the Freestyle Libre too. I feel like I'm technologically defunct but I manage fine overall.
The major challenge for older people in particular is that a lot of diabetes technology is expensive and accessing it can be a real problem because of the costs. Healthcare needs to be more affordable for everyone.
What or who has been your biggest support with regards to T1?
While it's important to find a good doctor (I feel really secure and happy knowing my current doctor, who also supports low carb) and have the support of family and friends, I can't emphasize enough on the relevance of finding others like you and being part of a community of people living with diabetes. I'm so glad I found you guys! Doing all of this alone can get very difficult and overwhelming, there's just SO much to know and do. I wasn't part of a community at first and spirituality helped me tide through the initial tough parts when I was alone and in the dark. The world truly became a small place once I began to find others like me. I realised everyone goes through similar joys and sorrows and sharing them with others multiplies the joys and divides the sorrows. Small things that make me feel connected and grateful for having a community - because of a recent discussion on DKA on one of our groups, I was reminded I've run out of ketone strips. People in the group shared their lived experiences of going into diabetic ketoacidosis and someone even shared an Amazon link to buy the ketone strips, that really helped and I ordered it immediately. It's definitely amazing being part of a community that gets it. Infact I also really enjoyed watching Dr V Mohan interviewing you (Nupur), I even have his book.
I know I might still be the odd one out for being diagnosed with T1D at 65, but I feel blessed to know we have a community to fall back on.
What does your average day look like?
My days are fairly relaxed. I keep myself busy and spend time swimming, reading (discovering the joys of Kindle!), meditating, doing yoga, connecting with friends and the larger diabetes community.
What's your message for people living with diabetes & their caregivers?
It's okay to feel exhausted or seek help. It's a blessing to have something to turn to that can hold you up. Type 1 diabetes is no cakewalk at all. Everyone is so different in the way they look at life. I think that balance is important and you should do what makes you happy and laugh often!