Invisible disease

[Guest guest]

I wanted to make a comment on this excerpt from 's email:

----- Original Message -----

From: jessica

*****My family and friends support me, but its hard to talk to

them about it because to them I look fine, so they

assume I am ok. *****

There was a discussion about this on another list I'm on. One of the difficulty

with diseases like rheumatoid arthritis, fibromyalgia, etc. is that they're

basically invisible to other people. Because there are few external signs

(until you get a lot of damage in the joints so that they swell and twist) most

people are never really aware of what you're going through. It's too easy for

them to think " well, you LOOK okay so you must be okay " . It's very frustrating

and sometimes hurtful to the one that's going through all the " invisible " pain.

What I've done to help with this is to educate myself quite a bit on the

background, symptoms, medications (and side effects) that are a part of

rheumatoid arthritis. I want to be able to explain what RA is, what can/can't

be done and why some of the medications are so bad. I don't want to bore them,

but I'm not willing to have people look at me and think I'm making things up or

just being lazy when I say I can't do something. I've also given up trying to

hide when I'm in pain. I'm not going to walk around moaning, but I used to try

to smile through all the pain and act like I didn't hurt, but no more. If I

hurt, I'll smile politely and say " I need to go, I'm really getting sore " and

I'll go. I don't want their pity or sympathy, but it's a fact of life for me

that sometimes I really hurt and I'm damned if I'm going to hurt more just to

make other people happy.

I also take responsiblity for my treatment and I'm proactive. I'm not going to

let a doctor push me around - when I go in, I've already researched and made

some decisions and I have my list of questions for my doctor written down. I

also go in with a print-out of my progress, including the medications I'm taking

(dose, time frame [day started, etc.]) and how I feel they've been helping me.

I am VERY lucky to have a doctor who has worked with me every step of the way.

She offered the typical medications (methotrexate, etc) but was willing to

research and prescribe the antibiotics instead.

We didn't ask for these diseases, but they're very real and they're not much

fun. The best we can do is be knowledgeable, proactive and honest about what

we're going through - both to ourselves and to others.

in Alaska