Dealing with an invisible illness is very difficult, especially when you are still in school. You get bullied, lose friendships, and grades suffer. It’s frustrating, and for me, I felt like I was losing everything. People thought I was making it up to get out of going to school. My invisible illness is endometriosis.
The summary of it, according to the Mayo Clinic, describes it as:
“an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus.”
Many women say it’s the worst pain ever. It has personally kept me from doing many things. The worst part is that they have no cure for it yet.
Growing up with endometriosis involved many trips to doctors and hospitals for pain. I felt like a trial and error guinea pig, bouncing from doctor to doctor. Because I was still so young, they tried many other diagnoses before finally concluding that it was, in fact, endometriosis. It caused my mom to miss work for my appointments, and we had meetings at school because I was missing so many classes. On days where I did try to go to school, I’d end up calling her to come to get me because I was in a lot of pain again.
Another hard part about this whole situation was my dad didn’t believe anything was wrong. My parents are divorced, so he would call and tell me how I’m messing up my life by skipping school. Then he would give my mom a hard time about allowing that to happen. My brothers would do the same.
Being a teenager is already hard enough, and this just added to it. You naturally want friends and want to be included. This really held me back from that. I found myself in a deep depression. After leaving school, I would stay holed up in my room. I felt like I had failed myself and my mom, and that was the worst feeling.
Once I was diagnosed correctly, we were able to proceed with surgery to clean out the worst of it, I took some online classes and started getting on with my life. Surgery is only a temporary fix, but it helps for a couple of years. I still battle with it to this day, and it does get awful, but at least I know what it is.
I wish I could go back and redo that part of my life, but I also am happy and proud of how I bounced back from that experience. I do wish I would have gotten involved in something just to have a social life. I believe that would have made things mentally easier on myself. I also feel like it made me have more of an open mind to what others may be going through, even if you can’t see it.
An invisible illness can feel like a life-sentence to missing out on a lot. My family believed that if you are too sick to go to school, then you are too ill for anything else. I was inside a lot, and eventually, that became my choice. The depression brought on by initially not knowing what I had going on inside my body.
If you have a child that has an invisible illness or is going through something similar, please don’t let them feel alone. I know I wasn’t, and my mom really did her best, but depression can really make you feel alone even if you do have the best support system. My depression went out of control, and thinking of those days still really hurts because I don’t ever want my daughter to feel like that.
If they miss a lot of school days or you see subtle signs of your child being bullied, consider other options for education. In my experience, I had missed so much school that it was not just hard to try to go back, it became impossible to go back not only because of the work I had missed but also because I felt alone. My illness cost me friendships.
Any illness has a learning curve. You learn to manage it and find a way to get back on track. I still have my bad days, but I also handle those better and know when to listen to my body.
Some relationships have been mended, and others had to be cut off because when you’re dealing with something, and they don’t want to understand, it only hurts you. If you have a child going through something tough, don’t be afraid to keep them away from someone if they are only making them feel wrong about whatever it may be.
My best piece of advice is don’t get discouraged. You need to keep going to feel better no matter what the battle may be against. I let this beat me for a while, and I was accomplishing nothing. That only made me feel worse. I used it as an excuse to get out of things. Then I felt crappy about it. I’m not saying pushing anyone to their breaking points. Just don’t let it run your life, your kids’ life, or keep them from dreams.