I have an invisible disease, two in fact. I have Rheumatoid Arthritis and Fibromyalgia and I have had a terrible few days. I thought I was doing better, but I recently had a severe allergic reaction to a steroid injection. To make matters worse, my right knee is retaining fluid much like my left one did a couple months ago. The only thing that relieved the swelling was a steroid shot. ~Sigh~ Now I wonder if a shot in my right knee would end up being the end of me. Water on the knee caused by RA is painful and limits mobility. I hope I can meet the physical demands of having small children, one with special needs. “#&÷£#;&^:!* it, I want my life back!!!!” No, I am not asking for sympathy. I am determined. I want to take charge of my life again. I can’t do it without help and I want to tell you a few things about living with chronic, invisible disease:
I want your understanding. I may choose my absence, but that’s not how I want it. My heart wants to be around even when my body doesn’t. Don’t take my occasional absence personally.
So, don’t forget about me. If I can’t go out, even after you have asked on multiple occasions, please keep trying. I really want to go but if I decline, I do have a good reason.
Sometimes others make me feel guilty about having an invisible disease. Not all disabilities can be seen with the eyes. If I require assistance, I assure you, I need it.
I may not look sick, but trust me, I am. I don’t grimace in pain or neglect to take care of myself to gain attention. I want to smile, and I want to look like everyone else. And telling me, “At least you look good,” is flattering but it doesn’t help.
It is hard for me to ask for help so offer a helping hand, even if I don’t ask. Unfortunately, asking for help makes me feel defeated and I don’t want to feel like I have given up.
Don’t treat me differently. I don’t want conversations to feel like those offered to mourners at a funeral. I am still alive.
Don’t make assumptions on my behalf. Would you want to be left out because someone assumed you didn’t want to do something? Again, I’m not dead.
It’s okay to ask if you can help me when you see me struggling. I won’t be offended if you offer to help me carry something or open my door.
Don’t ask me about my health if you don’t want to know. I am an honest person and I don’t like to sugar coat my life to make you feel better. If I get the chance to unload, I’ll take it.
I still want to feel useful. If it is within my ability, I want to help.
Don’t ask, “Are you better now?”
“No, would you like me to be?” I have a life sentence, it will be better for both of us once you accept it.
Please remember, there is no cure for my disease. Although I appreciate the suggestions of alternative healing, I see a specialist. We are working together to give me the best chance of a productive life.
Make me laugh. Even on my worst days, I can almost forget my pain when I laugh.
Be a soft place for me to fall. I need a safe place to be at my worst.
I need friends I can trust. I don’t want drama. My life is too difficult to deal with extra stress.
Be patient with me. I am still learning how to live with a chronic disease. I have good days, I have bad days, and I have really bad days. I am doing the best I can and I am determined to overcome. What I need is you. I need a friend, I need support, and I need lots of love.