What I would like to tell people with an invisible illness
I have not written a lot lately. I got on a nice schedule and was becoming so proud of myself because my stats were going up, and people were reading my blog. Then I started having “episodes” again that brought me low and have put me pretty much out of commission for a bit. I have issues related to an accident from fifteen years ago. My trauma was completely head related and invisible for the most part, unless I want to show you my bald spot and star-shaped scar. Because these issues are invisible, I deal constantly with people trying to downplay my issues and also try to act like they don’t exist because of the mentality that if they cannot see it, I must be making it up. Honestly, it sucks.
Having a TBI (traumatic brain injury) sucks, especially if your issues relating to it are not visible. I never had a migraine until my accident, and since my accident, I have had many. I have some really scary ones, and they inhibit me from leading a normal life sometimes. After my accident, I had trouble reading and typing. I wanted to be a writer. I had started writing a novel. One day, in an act of frustration, I deleted the whole thing. I took all of my writing journals from everything I had written in high school and college, even copies of things I had published and trashed them. I was so angry because I felt like I had lost my talents and was struggling because I was having issues in my college classes. I felt defeated. A lot of my friends and family did not understand what I was going through so I stopped talking about it. I had heard that a few people talked about me behind my back and acted like I made my problems up because they could not see or feel the frustration I felt. I had problems getting help because my lawyer for my accident was not a good advocate for me, and then after it was over, we did not have insurance. I tried to cover up my issues and move on. I would have problems and cover it up, often being called a flake in the process. However, I felt I was moving on with my life…until my relapse almost two years ago.
The last two years have been really hard. I had built a business. I had planned on finally finishing my college education. I thought I was really hitting a new milestone. Then, it was like I was back to right after my accident. I had a lot of speech problems. I had episodes where I had no idea what was going on. It was scary as hell. I started being more honest about what was going on, and I do have a lot of support because of it.
However, there are those who still whisper about me behind my back. I had an awful episode last week where I basically had migraines, strange headaches, speech issues, and complete exhaustion for several days. I have been to the doctor and have visits with a doctor, a chiropractor, and another doctor this month. I am hoping to get some relief and some answers, but it is so frustrating. I have had a lot of bad luck with doctors, including my last neurologist who found a benign cyst on my brain but would not look into it further, nor answer my questions. To be honest, he was more concerned with my weight, than my brain. He even gave me meds to say as much.
Why am I saying all of this? I am sharing because I know that I am not the only one who suffers in silence. After fifteen years of suffering, I know now that I must be my own advocate. I know that it is frustrating when people try to “diagnose” you because they know someone who was this, and so you must be this….blah blah blah. I hate when people think you are faking it because they cannot see or feel what you are going through. I know what it is like to be depressed and never know for sure if you are depressed because of a chemical imbalance or out of sheer frustration because you just want your life back! I have all these dreams. I want to do so much more for my life, and I feel every time I start getting somewhere, there is my brain injury issues to muck it all up.
To put it simply, it all sucks. Somedays, it is hard to just get through the day. Somedays, it is hard to want to try at all or to believe that some day you might get to do all the things you want to do. I feel so powerless sometimes. I feel like this is consuming me. I feel alone. I feel like I am letting people down. I feel so tired. Most of all, I feel like a broken human being. I feel like I am being punished, for what, I do not know. I feel like giving up sometimes. It hurts.
If you have an invisible illness, I want to say that I am sorry for you, and that while some people are not going to understand, talking about it does help. Making people aware of your issues helps, even if all it does is weed out your support system. And a support system is something you need, no matter how small it may be. Having people check on me over the last week made me feel loved, even when I knew some were talking about me behind my back saying I was faking it. Those are the people you keep in your life. With the others, while it is hard, you just have to let it roll of your back.
I am hoping to be able to write regularly again soon. However, I am taking time now to take care of myself and evaluate my activities while I wait to see what the doctors find out and hope some relief comes soon. Also, I need to find a new series on Netflix or Hulu. If I cannot do all the things, at least I can watch them!