The statement I am confronted with the most when someone finds out I have a chronic illness is “you are too young.” Although getting sick at such a young age or even sick at all isn’t ideal and wasn’t how I saw my life playing out I wouldn’t change it. Many are shocked when they hear that I am ok and in some sense grateful for when I got sick. First of all let me preface by saying in my perfect world I would not even know what Dysautonomia was let alone have it, but we aren’t living in that perfect world. With the circumstances, I wouldn’t change when I got sick and here is why.
I was able to develop amazing friendships and a support systems who stuck by me when my P.O.T.S. became full blown. Friendships and relationships are something that becomes way more complicated and many struggle with when they develop a chronic illness. This is due to the new dynamic that is introduced. Also, due to fatigue or medical issues, many times people with a chronic illness, myself included, have to cancel plans. This can cause a huge strain on relationships especially if this hasn’t always been the case. I was very lucky in the way that when I first got sick I was just transitioning to middle school so my friendships were new and developing so my friends for the most part hadn’t known a time before I was sick. So, they were used to my limitations and my canceling of plans. These friends became a huge positive and support in my life when my P.O.T.S. became worse and I found myself in a wheelchair. Instead of focusing on what I couldn’t do and my new limitations, they began to argue over who gets to push me 🙂 Now I, like many with P.O.T.S., lost some friends along the way but I definitely am lucky in the support I have and I know getting sick at such a young age is part of the reason I have my cheerleaders!
When my P.O.T.S. became full blown I was in my junior year of high school, and many saw this as me missing out of the prime of my life. But instead I chose to see it as the prime time to get sick. I was fortunate to have a chance to plan my life to accommodate my illness which is an opportunity not many get. I am at the age where I am still figuring out what I want to do with the rest of my life and what career path I want to take. Since I got sick when I did I can still change my path to find a career that I not only love, but that I can still do with P.O.T.S.. This is a problem many have when getting sick later in life; they have jobs or degrees that are now difficult to do with their chronic illness. I was also fortunate to still be living at home, because I became and still am very dependent. I am very grateful I was not off at college and like some with P.O.T.S would have to drop out and move back home. So even though I might have missed out on a few high school memories, I am very grateful for the opportunities I have that I might not have gotten if I got sick at an older age.
This brings me to my next and final reason I am blessed to have gotten sick at such a young age. Getting sick has taught me many lessons over the years but the most important being, you never know what is going to happen so don’t take anything for granted. I have learned to live my life in a manner of living in the moment and treasuring those moments. Instead of focusing on all the things I miss out on, I choose to focus on the things I get to have part in. So even though I did not get to make all the stereotypical high school memories, the ones I did get to make, I cherish. I know if I hadn’t gotten sick I would not have this mindset. And although many eventually come to this conclusion in life it is often too late. I am very grateful to have learned this lesson so young in life, and get the opportunity to cherish the things in life many won’t. Now my advice to you is be grateful for and cherish everything you are given no matter how small, because you never know what the future holds.
Extra Advice From a Potsie: So what should you do if your friend has or develops a chronic illness? My advice is to most importantly be patient. Our bodies and minds are going through a lot so just be patient with us. The next big thing is show us you support us. Fighting a chronic illness is tough, trust me, and we need support to do it. But how do you support? Just ask. Everyone with a chronic illness needs support in different ways, so don’t be afraid to just ask how you can best support them and then follow through. Another huge part is be willing to adjust. Keep in mind we are adjusting our whole lives and finding our new normal this means we might not be able to do things we used to or can’t go out as much. This might mean finding new activities to do or instead of going out as much, going to them. Finally don’t blame us. Developing a chronic illness is hard and not being able to put as much energy into our friendships/relationships is difficult for us. Know that we aren’t canceling plans because we don’t want to be there; we do, our bodies just aren’t allowing us. If we could be there for you or go out often we would in a heartbeat so don’t blame us for the limitations our bodies put on us. Just remember we love you and thank you for your friendship.