Saturday, July 16, 2011

RA etiquette

"You don't look sick". I get that a lot. I know the person giving the compliment means well. Which is why I really don't complain about it. It's just something I want to put out there because this blog is about raising awareness.

This disease is inside our body like every other disease on the planet. As you are saying how we don't "look" sick, we are thinking about how shitty we feel. We are remembering the hour it took us to get ready to come out and meet you.

To define getting ready is taking a shower and moving real slow so we don't slip, then resting on the bed after because that drained us. Next we brush our hair, put on some makeup, and brush our teeth all while leaning on the sink or counter. We cant grip the tooth brush so we wrap a washcloth around the handle with an elastic. Now back to the bed for 5 minutes to sit. Let's get dressed now and struggle with the zippers and buttons and tying the shoes. Tired again let's go back to the bed. A pretty outfit needs pretty jewelry. Spend about 5 minutes trying to keep the clasp open on the bracelet and the matching necklace. It's complicated because you've just used your hands doing your hair, makeup, and getting dressed. Your hands have gotten swollen. Now that we are exhausted we are ready to go.

I remember when I first got RA I read somewhere that friends have a hard time adjusting to the disease. They don't understand why you cancel plans last minute or why you can't plan ahead. They don't get you have to take things day by day, even hour by hour. Throw in the weather and forget about it. You could see me at 10 a.m. and I don't "look sick" then at 3 p.m. I can't walk. It takes a strong person to be a friend of someone with RA. You have to feel secure enough in your relationship that when I blow you's me...not you.

Saying we don't look sick I think must be something that gets blurted out because others feel uncomfortable. It's kind of like looking at Aunt Edna in the casket with her caked on makeup saying "doesn't she look great?!?" The chicks dead so I don't think it's really a compliment.

I have to say I have altered or kept my mouth shut a lot more now a days. I look at things through other points of view before I speak. I listen more and pay attention. So there's a positive that has come out of having RA I guess.


  1. many years ago I took a seminar on listening. To be an effective listener one is suppose to be quite and let the person talk. Maybe once in awhile shake your head up and down and by all means make eye contact with the person. Then after they finish and I mean completely finish, one is suppose to basically repeat what the person said to you so that they know you were listening. What i find is no one really listens anymore and that is why we get these ridiculous comments all the time. If people would just shut up and put up they would then understand what an ra person or any person with a chronic illness is trying to tell them. Anyway...just my two cents :-) And yes, I was listening to your blog...well written!

  2. May I quote your comment about "Doesn't she look great!" about Aunt Edna. It is about the greatest comeback I have ever heard for "But you don't look sick."
    Thanks for the much needed laugh. Cynthia