We feel betrayed by our bodies. Most of us have more than one disorder/pain going on. Even if we manage to get one to ease up, others appear.
We pretty much give up on fun. Physically we aren’t able to participate in sports or other physical activities. We have to say no at the last minute no matter how much we wish to participate in activities and that includes family activities. Our families don’t understand.
Some of us have to work still. I am on disability, but that limits my income to practically non-existent. Those that still work miss days and have a drop in income as well.
At one point I tried working a full time job and almost full time job just to keep a roof over my head and food in my stomach. I also tried to go to school at this time. Physically it made me very ill. I just couldn’t do it anymore and my bad finances became worse. There was no money for fun things even if I physically thought I could do them.
I no longer go to malls to just shop for the day with the kids (fully grown with kids of their own now).
Usually once a year we have a day trip to my sister’s shore house and spend time at the beach. The walk and getting in and out of a chair is nigh on impossible. I watch everyone else have fun. My body won’t let me do that. My family wants me there, but it is usually pure hell for the day and I have to spend days recuperating my strength. My father has driven the last couple of years since he started going now that Mom is gone. I can’t drive that far, the stress is too much also. Stress puts more strain on the Fibromyalgia and other chronic pain. Nothing has been said about this year yet. Not many weekends left.
There is also anger at the people who think we are lazy or faking and that includes family. We don’t look ill so strangers don’t believe it and sometimes even our own family doesn’t believe we are sick.
Invisible illnesses are not fun. Anger may be too weak of a term. I tend to rage about my deficiencies.
Teresa (Tessa) Dean Smeigh
-Advocate For Mental And Invisible Illnesses
-Author Of Articles, Stories And Poems