Not too long ago I wrote an article detailing my experience with Chiari 1 malformation and how it affected me growing up. I was so proud of my article I shared it on my Instagram, Snapchat, and I sent it to many of my friends, as well as my mom. Those are my social media accounts that are made up of only my friends; it’s very rare I’d find a relative on those sites. However, I did not share the article on my Facebook, which is made up of mostly family and relatives. The reason? I didn’t want to make them uncomfortable.
I was so afraid my family would criticize what I wrote and think I was overreacting –something they’ve done my entire life.
I didn’t want them to know how they made me feel because for some apparent reason I care more about their opinions of me than I do about sharing how I really feel.
It’s not often that I refrain from posting how I really feel in order for those around me to be more comfortable with me.
When I first became drastically ill from what was later discovered to be an aneurysm as well as Chiari malformation, many family and relatives did not believe I was ill. I was told to “just get up” when I started using a wheelchair. When I was told I needed surgery I was asked, “Are you sure there isn’t something you can do to fix it?” I required intense brain surgery at the time, but somehow it was my fault that I needed it. When I started sharing pictures of me living my life in a wheelchair, I was told that a member of my family didn’t reach out because they felt I was asking for attention.
I’ll never understand the view on sharing your health journey on social media.
If I share too much, I’m asking for attention.
If I don’t share anything, my illness isn’t real.
As someone with a chronic illness, I need people to understand that my illness is part of my life. Some days I’m functional. Other days I struggle with severe pain so much so I end up in the ER. When the severe form of my illness hits, it’s not me asking for attention. It’s me living my life the best I can.
I think many of us with chronic illnesses who don’t always make the most physical appearance deal with this a lot. After my surgery I was asked if I didn’t need that “damn dog” anymore in reference to my mobility/anxiety service dog. When I choose to use a mobility device, I’m told I’m over exaggerating my symptoms. It seems like such a simple choice, that I should use my service dog to help me function. But for some apparent reason, my health choices have some effect on those around me.
These choices don’t just stay with my mobility devices. They extend to my doctors, my treatment plan, my physical and occupation therapy, and my medications. None of my choices have any impact on others, yet everyone feels like they have a say. Why?
As someone who deals with panic disorder and depression on top of my chronic illnesses, it’s hard to deal with the judgment of others. So while I’m trying to stay positive and share the good experiences of dealing with a chronic illness, I need others to realize that bad experiences are a part of it too. We need to stop only supporting those with chronic illness when they’re doing well. Your friend with a chronic illness is just as upset or even more upset than you about having to cancel plans, so don’t treat them like the bad guy. We’re all trying our hardest to keep it together.
So from now on, I’m going to attempt to put myself first.
I’m going to stop trying to make everyone comfortable and let myself share how I feel for once.
I have a chronic illness. Every choice I make is to help mitigate my illness. Just because I can finally go back to work doesn’t mean I’m automatically better. I’m allowed to have good days. I’m also allowed to have bad days. And I’m allowed to share how I feel without judgment.
So while it’s going to be very hard for me to stop making everyone comfortable at my expense, I’m going to try.
Follow Liz’s journey here.
Do you struggle with family and friends not being able to understand what you go through with chronic illness? Let us know in the comments below.