Chronic illness is a heavy weight you’ve been forced to carry. It’s not your fault, but it’s your reality. Try your best to make the most of it.
Truth is, I’m scared. I have so many health issues that I worry about my future and everyone in it. If you don’t know already, I have myasthenia gravis, gastroparesis, rheumatoid arthritis, dysautonomia (POTS/NCS), I’m a carrier for hemophilia and I have a few mental health struggles. It could be worse…I could be dying, but it’s still really difficult sometimes.
It’s hard to be ill and not be your illness, if that makes sense. I look like your average girl and you probably wouldn’t take a second look if you passed me on the street. But my body is a mess (on the inside).
My goal of this post is to let other spoonies know that it’s ok to be depressed and it’s ok to wonder what your future will be like with a chronic illness…or two, or four. Don’t let anyone tell you that you shouldn’t be worrying about the future. Chances are, they are too. Don’t let anyone tell you things like “but you can’t change it” or “there’s nothing you can do, so stop thinking about it”. Duh, I know those things and you saying them doesn’t make me feel better. Just let me get out my thoughts and concerns.
I think there’s a fine line between complaining too much and just expressing your worries and fears and being anxious about what you’re going through. They are right, you can’t change what you have, so as I said in the first paragraph, try your best to make the most of it. That’s all you can do.
I can’t do many of the things I used to do to release stress, so I am really trying to find new hobbies and things I enjoy that don’t require much physical effort. Before the dysautonomia started I was a gym rat. I spent an hour to two hours there every single day, burning up to 1,000-1,500 calories. Before myasthenia gravis started seven years ago, I used to play softball, tennis, and golf. It is safe to say that I feel like the things that I love are slowly being taken away from me.
Because of this, I recently reached out to a few other spoonies and asked them what they do if they get to far into their heads and thoughts, or if they can’t physically do much. They came up with so many great ideas and I am so thankful for each and every one of them, even if we don’t share the same chronic illnesses. I think they all affect us in similar ways.
So, it’s ok to feel down sometimes. Depression is not weakness. Highs and lows are a part of life. When I was going through what I am going through now in high school, I didn’t really have anyone to talk to because they couldn’t figure out what I had. I had no one to turn to. That is an awful feeling.
I hope to be the person others can turn to when they feel like they have no one. I have been there and it sucks. I wish I had the wonderful support groups that I have now, back then. There was a time that I thought I wouldn’t survive and I did, and I can do it again.
Sometimes people just need someone to listen. No advice. No words. Just a shoulder, an ear. In fact, listening is often the only thing needed to help someone.