I was diagnosed with POTS when I was 16. POTS is a chronic illness and a form of dysautonomia. This means that I will always have this illness, there is no cure, and that the thing making me sick is that my own body does not function like it is supposed to. POTS affects my life in loads of different ways, but for the purposes of this post, I want to focus on how I view my body from the outside.
As a 22 year old woman I am very aware that I am not the only person who is going to see my body and make judgments about it. Some ways that I have experienced this are people commenting on my weight. I have always been skinny and short. It has always been incredibly hard for me to gain weight, and since being diagnosed I have worked hard every day to maintain a healthy weight. There was a time when I was severely under weight due to the way my body consumes calories and burns energy, and I have fought for every pound that my body is able to keep on.
While we are on the topic of weight, I feel it is important to mention that I have never struggled with an eating disorder. I have always loved food and I have never intentionally tried to lose weight. Growing up I was always very active, competing in soccer and, later on, tennis. During those times I could always rely on my body to do what I wanted it to. I had no trouble running a seven minute mile, I almost always had a six pack, and I never cared about what my peers said about me, because I knew I was fit.
Then my body started failing, and we had no idea why. I was losing weight, and was unable to preform in sports at the level I was used to. I lost muscle and strength. I remember standing in front of the mirror in my underwear and telling myself that I look sick. I knew that there was clearly something wrong with me, but because I had always been skinny, and the weight I lost was not visible to people in my every day life, I was treated like I was healthy. I was held to the same expectation that the healthy me was. That is when I started hating my body.
I hated that the pain I was feeling on the inside did not show on the outside.
When I was diagnosed with POTS and I came to terms with the fact that this was not going to go away, and for the most part my illness would always be invisible, I started to look for ways to love my body again. This is the body I was given, and I was determined to love it.
The first step for me was doing everything my doctors recommended to gain weight and slowly it started to happen. My weight fluctuates rapidly, and I still fight every day to keep it on.
Once I knew that I was doing everything I could to deal with the wight, I set about tackling the invisible part of my illness. One thing that really helped was being open about how I was actually feeling. When someone asks “How are you feeling?” instead of automatically answering “I’m fine”, I would really think about how I felt and answer honestly. I feel this helped the people in my life come to terms with the fact that they can’t determine what type of day I am having simply by looking at me.
Another thing that I would do that I felt helped was I would paint bruises on my body. This sounds weird, and in a way it is, but for me, it helped me validate my pain. Before I would shower I would sit in my bathroom and use eye shadow to create bruises over the parts of my body that hurt. Usually, this would be my head, abdomine, hips, and knees, but of course it can vary from day to day. I found it very helpful to be able to see my pain on my body, see that I was having a bad day. For me, it was my way of proving to myself that I wasn’t faking. It can be really hard to be in pain but look completely fine. Eventually, I became comfortable in the fact that I do not have to prove how sick I am, and when I realized this, I stopped caring that people couldn’t see my pain.
I am not trying to prove anything to anyone. I know how sick I am, and if you ask me how I am feeling, I am going to give you a honest answer.
I do everything I can to give this body of mine a fighting chance at functioning. It doesn’t always work, and sometimes it throws a curve ball at me, but I love the life I am living, and I get to do that with this body. I’m not mad at it, and when I look in the mirror now, I love it. It is fighting so hard every day.
My body is different, but that does not mean it is worse.
Maddie
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