Tuesday, June 23, 2009

So Glad Your Rheumatoid Arthritis Is Cured

“I am so glad to see that you are better now.”

I get these comments frequently and I am trying to understand them. Often, it occurs after I have washed my hair. Someone will come up and say, “I am glad to see that you are finally better.”

It is awkward. And so are my reactions.

Should I answer, “Why, yes, isn’t it a miracle”? No, sarcasm is not the right approach.

Should I ask, “Is that your way of saying I look nice today”? No, too rude.

Should I say, “No, I do not feel any better; I just managed to finally wash my hair”? Probably I should, but I don’t.

What I do is try to hide my stunned look. I feel embarrassed for both of us. I wrestle for an appropriate response.

Can I tell you what it feels like I hear being said to me? It sounds something like this: Thank you for not acting sick today… I knew you did not have an incurable disease… You can be alright if you want to be....

If I had actually gotten well in some way, they would be words of comfort and encouragement. But, I have very obviously not gotten better. The comments are said as I struggle to stand or walk. It feels like someone is belittling my suffering.


Here are the cold facts: It is so hard to style my hair now that I only do it a few times a month. Hand, wrist, and shoulder dysfunction make mascara and nail polish a rarity too. My appearance has been one of the casualties of Rheumatoid Arthritis. That’s pretty typical from what I’ve observed.

I am doing my best to survive. I am still a woman and my appearance does matter to me. But living matters more.

I got a phone call last weekend while I was working on my son’s birthday cake. It took me almost all weekend to make the special cake, since my hands kept wearing out. The lady who called is a sweet lady. However, after a few moments she said, “Well, I am glad that you are better now.”

Dead silence. Huh?

It wasn’t my hair. She couldn’t see me, but I had not even brushed my hair that day. I had to save all my strength for the cake. What did she mean? I can only guess. Either she is believing something that she wants to be true or is she sending me a gentle message to stop acting sick. I am still not sure.

I can only say that people have a lot of strange reactions to this misunderstood disease and this is one of the weirdest. Has anything like this ever happened to you?


nygiantsfanatic said...

I have to laugh at this because it made me think of a woman I know who, when I told her I have RA, said, "That's crppling. One of the Temptations has that and he's in a wheelchair." That conversation happened in Octobet of 2008. Last week she said to me, "Well, that medicine they have you on worked well. How long after the arthritis is gone do you have to be on it? Yes, this is the same woman.

Kelly said...

OMG!Giants fan!
Weirder and weirder, this thing.

Kirstin said...

People tend to not think before speaking, at least when it comes to dealing with a person and their illness. I get these comments a lot lately. I have taken the approach of just laughing (well, on the inside), because some people just will never understand. But I also realized, that most people, who are the "normal lucky ones", who never have had to deal with these illnesses, would have a hard time walking a day in my shoes.

On the flip side, instead of a negative comment, I was told that I looked happier and was asked what had changed. Without thinking, I just blurted out "I am not in chronic pain this week". This is a good thing! Wow! You should have seen the look on their face. In retrospect, I should have said something else, but I went for honesty.

Sometimes, you just can not win.

MissDazey said...

People can be funny! I have had so many people tell me how good I look. Here I am swollen face, huge weight gain, walking with cane, and I look GOOD? I know, people just don't know how to react.

Love this post Kelly. Made me smile.

Angie said...

Great idea for a post. I think all of us with RA can relate.

In my experience, I think that some people think that I have been told I have RA and that I take some 10 days of antibiotics and then its gone. Like it is a virus that can go away!

But from their prospective I am sure that is really hard to know what to say to people that have such a disease.

Jenny said...

This is all relatively new to me...the RA diagnosis, not the pain. Just started taking Plaquenil a couple weeks ago and seem to tolerate it well. I'm not a complainer. My husband truly doesn't have any idea how much I hurt, even though he has seen the medicines (the anti-depressants, NSAID, anti-anxiety, anti-acid, muscle relaxers, etc...)ice packs and the heating pads, the excruciatingly painful shoulders, the buckling of my knees, and the really, really good days, etc... (you know the lists).
I'm a little afraid and a little bit glad to finally have an answer after 12+ years and about 7-8 doctors making me feel like there's no reason for the pain. Why is it so hard to figure out!?

Probably the best thing that has happened to me most recently is that his back has started hurting for the last 3-4 days...is that hateful of me to say?? I am a compassionate person who doesn't want him to hurt and I love him dearly and he loves me, but I have no patience in his whining and "borrowing" my muscle relaxers! I told him today to get his own!
My discovery over the last years is to just suffer in silence unless I need some help because if I announced all my pain I would never say anything positive!
Thanks for this site...it's been nice to know that I'm not "the lone ranger"! I'm doing a lot of reading and am learning much.

Kelly said...

Hi Jenny,

I am so glad to read your comment! Your story echoes mine in many ways and - more importantly- a hundred others that I have read. doctors who said it's not anything... people don't realize how bad it is... you do not complain... years of undiagnosed pain...

I hope your husband is helped by his own pain to get a big dose of compassion for you.

Your "discovery" describes exactly how many of us survive. But, I am hoping we can change that together. No, neither of us will be the "lone ranger" if we can all stand - or limp- together.

Awesome comment. Thank you.

Jo-Ann said...

It is funny how some people can speak first and think second. I had a guy once after not seeing me for a while ask me what I had done to myself. When I explained to him that I have RA he said oh yea my mother has arthritis too. He had no idea what he was talking about. I just had to get away from him before he continued down the uninformed path.

Kelly said...

Jo-Ann, Ouch!
How rude of him. :C
That's what I do a lot too - walk away. I know we have to pick our battles carefully and sometimes we can change someone's mind. But, it's not easy with comments like that!