Wednesday, September 14, 2011

Don't count me out!

As a rule, I am very open about the fact that I live with both Rheumatoid Arthritis and Fibromyalgia.  I am most assuredly not ashamed of these illnesses because I know that I didn't do anything to "deserve" them or to "cause" them.  That said, I have found that there is a big difference between talking about it and acknowledging that I need help on occasion (stupid drink bottles can be a royal pain in my...hands) and publicly using assistive devices.  

It's funny, I can ask for help with carrying something or opening something or even having to sit down when my feet, back or hips start hurting and people don't think anything of it.  It's when I have to bring out the cane that suddenly people treat me as if I am a fragile flower and I am incapable of doing anything physical.  It's as if that cane is a visual cue that screams "SICK" or "IN PAIN".  The irony is that when I use my cane it is often because I have gone over that very thin line and the pain is beginning to affect my balance.  The pain level itself has something to do with it, but I can power through the pain, I am just afraid that I will fall.  That said- I have far worse pain in my back, in my neck my shoulders and my hands on a regular basis- you just can't see it because there is no cane for those body parts. 

The fact that I am treated so differently based on whether or not I need to use that cane makes me completely understand why many of  my CI friends are hesitant to discuss their illness with their employers.  I don't want to be viewed as ineffectual. The fact that my muscles or my joints are weak doesn't mean that I am weak. I don't want people to view me as "disabled" or have less confidence in my ability to perform my duties.  I don't want them to treat me as if I can't do something when I can, it just may take me a little longer.  

I don't want pity either.  The very last thing I want is for people to feel sorry for me.  I certainly don't feel sorry for myself and I don't understand why anyone would feel badly for me.  It's hard for me to accept when someone says "Oh, you poor thing" or "Oh, I am so sorry".  I don't quite know how to respond to that.  If I had the time I would tell them that living with the pain, the weakness in my joints and muscles and the knowledge that this is a life-long illness has made me stronger.  It has forced me to make changes in my life that have been such a blessing.  It has given me a reason to slow down and realize how lucky I am to have the wonderful friends and family that I have been given.  It has shown me how to appreciate the good days and it has shown me how to survive the bad with grace and humor.  Crazy as it sounds, it's almost been a gift.  

I would tell them that I do know my limits and for the most part I stick to them- but if I don't, I know the consequences and I can live with them.  I would tell them that it's far better to give me the option to try something and fail at it than to assume that I can't do it to begin with.  I would tell them that I am much stronger, internally and externally, than I look and just because I have this illness lurking inside me, it doesn't change my resolve.  I would tell them that whether it's true or not, when they don't allow me to make that decision on my own; it feels as if they don't believe in me.  I would tell them- Don't count me out, because I am more capable than even I knew; with or without my illness.  


MissDazey said...

Funny, I have never thought of using a cane as sign of being handicapped. Just as an aid,like eye glasses. Maybe it's my age.

Hang in there.

Jan said...

I know you keep on keeping on. Take care and hang on!

Wren said...

I can't imagine ANYONE counting YOU out, Jules. Seriously. You do so much in spite of your RA and fibro, "powering through it," as you say. You have tremendous strength and courage.

You're right about the cane, though. Using one absolutely does shout weakness, even though that's not true, you're only using it to prevent a painful and embarrassing fall. Personally, I've learned over the years not to care what others think, though. If they say things like "I'm so sorry," I simply thank them and change the subject. They're expressing, sincerely, their sympathy that I'd be in such a situation where I needed a cane, and that's nice of them. No need to go on about it, though (grin). I think the hardest situation for me is that I might need the cane one day--but then I don't need it the next. The people who expressed sympathy get a little confused, and I worry they'll think I was faking. So sometimes it's worth it to explain, along with that "thsnk you," that I've got RA, a disease that attacks the joints off and on, and that I never know which one is gonna get it next...

Yeah, too much information. Living with this disease not only requires strength and courage, it also requires a really thick skin.

My best to you, Jules. I hope this finds you feeling great and full of energy.

Jules said...

Thanks ladies!

Miss Dazey- it just annoys me. It makes me feel like it's a screaming sign that I am ill. Maybe it's my discomfort with the cane that makes me more sensitive to being treated as if I can't do whatever it is that I am trying to do.

Wren- you are right. It does take a thick skin and I think mine is feeling very thin at the moment.

A lot of this is brought on by stress. There has just been SO very much to do that I don't have time to deal with the RA screaming at me on top of everything else. I think it's time to take a deep breath and step back and look at everything objectively.