It has been a rough week. Migraines, fibromyalgia flares, you name it. These diseases are SO discrimated against. If I was crippled, no one would ever question my aches and pains; but since all my illnesses are undetactable based on looks, people always assume I am lying about feeling bad. It would be nice to know how to solve this problem.
Have any of you experienced this and if so, how did you handle it?
About Me
- Michelle
- TN, United States
- In February 2005, I was diagnosed with three chronic illnesses. The first illness, scleritis, is an auto-immune disease which causes thinning of the white layer of my left eye. Fibromyalgia, my second diagnosis, is an increasingly recognized chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. Last but NOT least migraine headaches. Then, in 2007 I learned I had Hashimoto's disease, an autoimmune disease of the thyroid.
8 comments:
I carry a cane, whether I need it that day or not (many days I do) that provides a visible statement to family, friends, and strangers. If someone asks, my standard statement "oh it's my lower back" (or knee, or hip, or ankle, or whatever it happens to be that day).
Rarely does anyone ask further but if they do, I just say arthritis and leave it at that. I don't mention any of my other chronic and invisible illnesses. Everyone understands arthritis and joint pain and limited mobility.
It works in the grocery store, work, theaters, sporting events, concerts, traveling, and everywhere you go. Attitudes really do change with the visible reminder. People "get" something they can see. So I simply provide them with something they can relate to.
Just something to think about.
HI there! I found your blog through Prof S and you bring up a very interesting point. It is very challenging living with pain and lookin' good. On the one hand...yay! we look good. On the other hand...How can we look good when we feel so terrible?
This is quite the paradox isn't it?
After reading your post and the one on Prof S's blog, I realized how very lucky I am because I don't get the "you don't look sick" comments. I was inspired to blog about this topic myself thanks to your post.
Here's wishing you a day, or at least a few hours, of relief.
The biggest hurdle for my wife is convincing doctors of the need for therapy and pain management.
She did go back to work after her initial attack. Fortunately her boss was very understanding as well as a doctor. So he gave her a lot of slack.
My issues are also invisible. I don't have pain that might cause me to grimace or limp. I get fatigue and brain fog, which must seem to others like I'm an alcoholic or drug addict.
Anyway, who is discriminating against you? Sorry if you've explained this -- I'm new to this blog. Prof S wrote about you.
Thanks to Prof S for writing about your blog post. It struck a chord with me about this subject. A friend of mine told me about a website that had the story of the "Spoon Theory".
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
I made some copies of this story and when I have someone ask me about why I do not work outside the home or about my illnesses, I give them a copy of the story. It sure got more people understanding about a chronic illness and how it affects us.
Hi Michelle, Great topic as it is one that so many of us are dealing with or have dealt with.
In the early stages of my illness, I experienced what you are--"how can you be sick when you look fine?" When we are ill, we have to learn to say "no", and I found that this was when I dealt with people not understanding the most. It's tough...you find out much about your friends and family...some get it and some don't...and it is painful.
My illness has progressed over the years. I started using a cane a few years back and now use a walker. I did not use these "independence tools" so people would get it...but it has been a side effect. People seem to understand something has definately gone wrong with you when they see you need a cane or a walker.
It shouldn't be the case though. Being taken at face value, having your truth and reality believed is what is needed. I've learned to treasure those who were able to do so.
Glad to find your blog! Thanks Prof. S for leading us to it. Kerry
I too found your blog through Prof S...I've added it to my blog as well so hopefully others will come visit.
I know for a fact that a couple of my co-workers think I'm making my pain up...but I can't waste valuable brain power on them. That being said I do tend to minimize my fibromyalgia around anyone other than my husband and son. Why???? I don't know. I used to carry a cane and it helped alot. I never thought of just having it with me like Prof does, I think there's some value to that.
I only used it when I could barely walk...but with the ongoing pains of fibro, it wouldn't hurt to have one with me most of the time. I know that I always used to joke that people would think I was faking because I would switch sides with the cane depending where my pain was the worst lol... keep your spirits up!
i have been battling an ear problem for 6 weeks that the dr just cannot get cleared. It becomes tiresome and I get cranky because I don't have what I call peripheral hearing. It wouldn't be so hard except I teach in an inner city high school and I need to hear EVERYTHING. Because I look fine, no one realizes I have this disability. It has made me more aware of what others must be suffering.
Post a Comment