You know they just don’t get it. Talking with people and trying to explain how I really feel on a daily basis. The pain and aches. Fatigue like you can’t imagine (unless you live it). The cognitive problems that aggrivate me to no end, make me feel crazy. Unless you have a chronic illness that lets you experience it first hand. It feels like you get blown off since it can’t be seen.
What would people think if this were to happen?
A woman sees an old friend outside a café. The friend is wearing a bandana around her head.
Woman: “Hi there (insert name)! How have you been?!”
Friend: “Hi! I am doing a little better now. I don’t know if you heard but I have (blank) cancer and started chemo.”
Woman: “Oh no! Well you look pretty good! My (fill in relative) had that last year and is doing great. I am sure you are too!”
Friend: “Yeah, well it has been touch and go, but we are hopeful.”
The woman then continues on about all kinds of things, leaving the friend to wonder if the woman heard her at all. Cancer is a life changing thing. Just because one person did great, not all do. The pain and stress, nausea, hair loss, so many things she is going thru, this woman just doesn’t get it.
Now I for one would be a little upset to be put aside that way. Come on, right? How can you blow off something so obvious and life changing?
Well, for those with invisible chronic illness (like Multiple Sclerosis and Fibromylagia in my case) it happens all the time. ALL the time. And by those closest to you. They just don’t get it. How can you make someone understand that not finding a word can be so frustrating, almost painful? On a regular basis too. I think my gram starts to get it since she had a stroke and is not always able to think of everyday words (chair, TV, phone, names etc). It is so beyond everyday “oh what did I come in here for?” or “I just can’t think of what that movie is called” types of days people get. The pain is more than I describe some days. Fatigue is more than I am tired. (I often get “Oh I wish I could nap every day!” I wish I could have the ability to no need one everyday!)
I think some days I just don’t bother wasting my energy on explaining. Why? I just don’t have the energy to spare. I use most of my energy pushing thru the pain and fatigue to get dressed, feed me and my daughter, spending time with her and my husband, my family. I get help from my mom and hubby, my daughter too. There is the understanding I need help, just not what I am actually going thru) If I can do nothing else, I want to be with the ones I love. Even if they don’t always get me. Just another part of the illness.