Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Talking to friends about AS symptoms/implications

I'm looking for suggested turns of phrase to help friends understand

* why a person who is able to ride a bike 20 miles/day can't simply stand up for 10 minutes

* how one day I can help mow a lawn or strike a stage or dig a hole, and the next I can't even sit and fold paper

* that this posture isn't the result of a choice or just being a slouch

I think they can tell it hurts, but when I get as far as "It's called 'ankylosing spondylitis,'" most people start looking at their watches. I get people who are engaged and trying to understand, and I still can't get it across.

I also don't know how to convey what it has done to my personality to hurt for years, and be so limited, and that if I'm hurting I won't act like myself.

I don't want to corner people and make them listen to my medical history, but does anyone have suggested ways of talking about this disease?

With other conditions, all you need is one word. If you say "cancer," or "heart failure," there's a common frame of reference. Most people know about these things.

What about an uncommon disease with a name ten feet long?

i'm not sure i have real answers for you, but i have learned who my real friends are.

some people in my life (more family than friends), i just don't talk about health much. i don't see them very often as we live in different states. so on the phone, i just talk about other things. if they ask, "how are you", i won't pretend and say everything is great, but i'll say "ok". only my mother pushes me with "just ok" and i say "yes" and then change the subject.

for my friends (at work) that see me everyday, or my friends that i talk to fairly often on the phone, i'm honest with them, but i keep it short. if i'm going to describe a particular pain, i try to think of something that they might be able to relate to. an example, recently, my hamstring tendons were really inflamed. my student wasn't understanding why i was having trouble walking (around boston at a meeting). i told her, it felt like someone was slashing the back of my knees with razor blades. she said, "ouch, that does sound painful" and then she seemed to understand that one thing.

so i don't have a specific word or phrase, i just find the right description for what's bothering me at the time. sometimes it works, sometimes it doesn't.

mostly, i don't worry about whether or not people understand. my husband understands and my friends care. and that is enough for me.

hope others have other ideas,

i'd like to hear them too.

sue

Hi Danny

At one point, someone had written something out that helped explain AS. It was in a story form, but I cant for the life of me remember who...

Another analogy that has been used is the "spoon theory"

click here to read it.

Maybe it will help?

Lori

https://www.kickas.org/ubbthreads/showflat.php?Cat=0&Number=276768&page=&fpart=1&vc=1

ths link to the article...I'm bumping up the article to make it viewable again..

That would be the one!

Thanks.

I find it impossible to explain my disease to people. I'll say "I have Ankylosing Spondylitis" and their face scrunches up and says "what's that?" When I say a form of arthritis I get the "isn't that an old person's disease?" I can't stand that comment! I do like that link to the story form of explaining AS. And to be completely honest, I still hae friends that have no idea I have AS. I keep it mainly to myself. If I need to vent or something, I talk to my boyfriend or family. Best of wishes.
- Angie

i find if i say the word "arthritis", a lot of people my age say,
"oh, i have that too." somehow that bothers me more than anything,
because then they think i only feel as bad as someone with a little
osteo.

sue

i say the AS name...and immediately add it's a SYSTEMIC ARTHRITIS.
thumb, shoulder, knees, ankle, back in four different places and the eyes...

everyone says in reply , in the eyes, too?

then i say i have energy problems...it's like driving a car without a gas gague;
you never know when your just gonna run out of gas, so it's hard to anticipate
the ability to do all the things i have planned on doing.

everyone will also add, oh, i have arthritis in my big toe too.
to which i add it's like the same but just bigger and everywhere.

I'm still new at this, but I've found that some people get it, some don't, and others are compassionate enough to realize they don't get it. I try to understand, because I wouldn't know much about this if I didn't have it.

I keep details away from people I'm not close to, they are on a need to know basis. I am always open to questions though. I understand that this is not correct, but I relate it to rheumatoid arthritis. People understand it to the point of knowing it's bad. The average Joe won't know how different AS is, or the complicated workings of RA vs AS. Many people are related to or know of someone with RA and their struggles. I only put this out on a small scale, because I also don't want to be compared to other people's conditions. Just mentioning RA lets people know that it's not an old person one-joint thing, but a serious part of my life. Others do hear the word arthritis and blow if off as being like their grandma's though. That still pisses me off.

Also, don't whine of course, but do not underplay your pain. If people want to know, I'm modest, but I do convey that I am in pain everyday. If you're really trying to make your point, throw in the fact that you may have to do self injections--that normally makes them cringe a little. Include the word spine too... that makes it good.

Many people I know have been so great about it. I have great co-workers, family, friends, and classmates. The people who see me on a daily basis, or who have known me before the AS got bad have an understanding. They see the changes in my physical abilities, and know that I'm not just being a drama queen. They see the fatigue and the constant pill popping.

Also, I explain that everyone has a problem somehow. This is mine, and I'm dealing. If it's not AS it's something else.

It really has opened up some doors to bond with people. For instance, I met one woman who I had to speak to about my hardships because she is a supervisor/mentor for me. She has the typically thought of arthritis, but it is spread throughout her body. She has some real impairments because of it. When I see her we can talk about it and understand each other. We have compassion for each other and it's one more great connection and support.

Just realize that no one can understand at all unless they know. After you pass on the knowledge, it's their part to care. Like I said, it's a need to know thing. And if they don't get it, whatever, move on.

Aly

My favourite has always been, "But you don't look sick!"

I always want to ask what 'sick' looks like.

I just tell people that I have an inflammatory arthritis. If they want to know more, I tell them a bit more. You'll come to a point where you'll have varying degrees of information you'll give. Newbies might just get the inflammatory arthritis line and the next level might be that it can affect anyone from childhood to age 40, and you feel better some days than others. My bosses, as supportive as they have always been, really didn't get it until I had to come in with a walking stick. Then it clued in that this disease is debilitating.

The spoon theory is an awesome way of getting across the energy issues, by the way.

Hugs,