Living with a chronic illness, I must explain to people isn’t glamorous. It’s not braggable, right? People respond with a look of pity, and there’s nothing more frustrating. They don’t understand – I don’t want their pity. I desire for understanding. I’m capable of doing what I need to do to survive, but sometimes the screeching in my ears is so debilitating that I don’t feel I can. 

I don’t need someone to feel sorry for me. I need someone to understand what I’m going through and show me patience. There are differences between understanding and pity. There’s something unique when someone shows patient behavior. It’s unusual for it to be that rather than feeling sorry for me.

Sometimes Meniere’s Disease takes over my life. The pain in my ears, the pressure around my neck and head. There’s something different about how I must explain it to people. I knew I was different at a younger age. I’ve always struggled with hearing and with my balance.

I didn’t know why I had this struggle until I was in my early 20s. My doctor explained that Meniere’s Disease could cause vertigo, nausea, the pressure in your head and ears that causes constant tinnitus. While sitting in the bright hospital room – moments made sense. Why I couldn’t walk in a straight line, why my ears rang more than everyone else’s, why the rain would make me feel sick.

Barometric pressure was a living hell for me. I still can’t stand it when it rains, even if the sounds are soothing- it will cause immense pain in my head and ears. The rainy days alone can incapacitate me. Rainy days can cause suffering, but at least now I had an answer. 

I never wanted to be that girl that has a disability that no one can see. Often while explaining, anxiety will rear up its ugly head. Anxiety shows up at the most inconvenient times – especially if someone has never heard of Meniere’s before.

Often it makes me feel selfish having to tell my friends I can’t come out. I can’t go out in public when the pressure is driving me mad. Self-care makes me feel as though I’m somewhat a monster that is only a burden to others. On certain days things are bad enough I can’t complete things.

When I explain this to people, it appears it comes off as an excuse. Doesn’t everyone deal with aches and pains when the weather changes? People suffer through it. I don’t want to explain to them it’s different for me. That explanation takes far too much time and energy for me. It causes me to become depressed.

I don’t want to be different- but the sad truth is; I am. I’m also a fighter. I know I can get through this and I can get what needs doing… done. I know that I can do it. I can fight through this. I will not let this consume my being – my existence.