Saturday, February 24, 2018

Lessons I Learned From Being Diagnosed With a Rare Disease

1- No matter how much medical knowledge you have or think you have, there will always be a disease you’ve never heard of. 

After 6 years of illness, I remember be shocked when my doctor told me she thought I had Stiff Person Syndrome. Because let me tell you, I had done my research over the years. I knew about plenty of rare diseases. But I had definitely never heard of that one. 

2- Doctors are human. As much as we like to think that they’re some sort of magical database of knowledge, they’re not. And when you have a rare disease, they often have to Google it in front of you. 

3- You should probably have a short version of an explanation prepared for when people ask about your disease. Because they will, and sometimes it’s hard to explain. 

4- With rare diseases, it is RARE to be diagnosed in a timely manner... for obvious reasons. The doctors you’re seeing don’t even know this disease exists. And maybe you’ve even heard, “It’s rare so you probably don’t have it.” 

5- You learn to appreciate the people who stick by you. Going for years and years of barely being able to leave the house much, so many friendships get lost. But those ones that stay, those are the keepers. 

6- Compassion. You learn compassion and you’ve gained wisdom. Because you’ve gone through an ordeal. Maybe it was years of doctors not believing you. Maybe it was friends slowly disappearing. Maybe it was your family being unsupportive. Now YOU have learned to believe in others. You’ve learned that good friends are worth more than money can ever buy. You’ve learned that you want to be there for others whose families might not be there for them. Because family isn’t always blood. 

7- You’ve learned the importance of advocacy. Our disease are under-researched, and underfunded, and that is part of the reason we wait so long for a diagnosis.

8- Communicating with someone who also has your disease is like finding a long lost brother or sister. And the bonds you form will be unbreakable. 

9- Sometimes, you learn to be somewhat okay with being an experiment. Your disease is rare, and it might be your doctors first time treating it, so they are learning along with you. They are doing what they can and trying treatments they think will work on you, and while some of them will, some of them will not. 

10- “When you hear hoofbeats, think horses, not zebras.” Well, sometimes it’s a zebra, and sometimes that zebra is you.  And you learn to make noise, so that other zebras are heard also. 

Monday, February 5, 2018

To The Parent Whose T1D Teen Is Struggling

2007 and 2017

I was 12 when I was diagnosed with Type 1 Diabetes in 2005. I did the best I could to hide it throughout high school because it made me feel different. I would skip testing my blood before lunch because I wanted to sit with my friends. I had already spent my whole life around diabetes because my mom was 8 when she was diagnosed. I was diabetesed out. 

I didn’t want to talk about it. I rolled my eyes when I got nagged about it. I think I did what most T1D teenagers do.  I had no interest in any technology and kind of just wanted to pretend it wasn’t there. 

All of this might sound like your kid. Do they just not want to acknowledge their diabetes most of the time? Are they completely uninterested and put off by it? Well I put together a little list of advice from someone who was there not too too long ago. 

1- You can try and talk about it with them over and over again, but it will just push them further away. Let them come to you. When they’re ready. As overwhelming as it is for you, it is for them. Make sure that even though you’re worrying, you’re giving them breathing room.

2- On the contrary, let them know that you’re there to help whenever. Ask what they want help with versus what they want you to back off from and wait for them to ask for help if they need it.

3- Know that it’s natural and human to worry. They still feel like your baby. There’s already enough to worry about as your teen starts slowly growing into a young adult, but when you add diabetes to the picture it’s a whole other layer of worry as you’re forced to give them some trust to take care of themselves on their own.

4- You may have read about Friends for Life, a conference put on by Children With Diabetes every summer. The conference center is filled with Type 1 families. I remember sitting down at a big round table with breakfast from our carb-counted buffet with my young adult friends. We ended up chatting with the ladies sharing our table, who were moms of T1D teens, and they wanted our advice. They told us their teens had no interest at all at looking into pumps, and that they just didn’t want to talk about diabetes at all. The first thing that came to my mind was to offer up myself. I gave her my info and told her that I’d be her daughters penpal, and that maybe it would be nice talking to someone just a tiny bit older who gets it. Find your teen a “big T1D sister or big T1D brother”, or set them up to find their own. Which brings me to my next point. 

5- There are many ways to go about this. A) Try attending a fun conference like Friends for Life. There’s camp for the teens and they go to Disney and have socials and it’s tons of fun. The teens all either have Diabetes or have a sibling with T1D. I happen to know some of the Teen staff and they’re so much fun and great mentors. B) Try to let your teen know about the Diabetes Online Community. They can find a bunch of other people their age with T1D, with common interests, and most importantly, common frustrations. One thing I’d recommend would be joining the Beyond Type 1 app. This is app is for anyone with T1D, and loved ones of T1Ds. If you’d rather go on yourself and ask for advice from fellow parents, there are always people willing to help. If they want to sign up themselves, even better, there are plenty of awesome teens on there that would love to befriend them! And they can vent when they feel like the need, to a bunch of people who get it and who they can even laugh about diabetes with. C) Another option is signing up for Beyond Type 1’s Snail Mail Club. They will set you up with a penpal around their age, and they’ll get sent a little package with stationary and stickers. It’s a fun old school way to connect with people who can relate. 

I hope something in here is helpful to a T1D mom or dad somewhere. Know that the teen years are the hardest, for the parents and the kids, but that it gets easier. Your teen will come to terms with their defective pancreas, no matter how long it takes. There will be bad days and good days. And once you make it through those teen years, while you let them know every once in a while that you’re there whenever they need you, they will blossom into young adults who want to spread awareness and fund for a cure just like you.