Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Would you say anything to mean people?

Hi Everyone,

I couldn't figure out if I wanted to PM the question to somebody personally, because I feel it's something I ought to keep private, or just simply come out with it and ask it and get everyone's opinion. I have finally decided on option 2 because I figure this may help someone else. This is not a problem here at the forum, but it is a problem I have in the real world.

Would you say anything if someone told you that you are the blame for the way your AS has turned out? Or better yet, "How could you let your AS get this bad? (followed by how they describe seeing me as)"

Once in a while I have to listen to things like this, so I was wondering...
How are we supposed to respond to something as harsh as that? I ignore them but it doesn't stop anyone from doing it.

It didn't just happen now, but I was just reminded of this, so I'm just curious....
P.S. I am not poking fun at anyone here, this really does happen to me.
Your are my family here I would never do that to anybody.
I'm sorry if anybody gets offended.

Thanks in advance.
James.

Hi James

If we had the choice and controls to how the advances of our AS happens, would we all here, not have the cure.

Why would we choose to live in pain, and put up with family members, my sister, who said "I would kill myself if I had all the health issues you have." In my case I have chosen to only call my sister on special occassions without any word of how I am feeling.

Many here go through the same thing. I am sorry you also have had to deal with an insenitive person. I have chosen to avoid these insentive people in my life. My family is here at KickAS, who know how we feel and they are there for each other.

I have few friends outside KickAS, who understand, but they are few and far between. These friends I also hold close to my heart.

Hugs

Gerri

Well, I've had similar situations in the past. I've had many DOCTORS make me feel like this whole thing was somehow my fault. That's bad enough, but I've also had many people closest to me tell me to my face that I don't even really look like there's anything wrong with me. I'm one of the more fortunate ones that many of the deformities can't be outwardly seen on me. But to me, that's a very insensitive comment to make. I work with a woman who has some very serious heart problems & has had a couple heart surgeries say to me that I don't even look like my back hurts most days. I did reply to her I'd never know the seriousness of her heart condition by looking at her either. Because I've learned through all of this that just because you can't SEE the effects of someone's health condition, doesn't mean there isn't anything wrong. When you have some chronic pain & deal with some of these problems for years, to some extent you have to adapt & keep going. Life doesn't often give you any other choice. And sometimes, I guess other people wouldn't see it. But for people to say to your face that either you're too bad or not bad enough is a very insensitive remark because none of us knows for sure what another person is dealing with.

I don't expect people to want to listen to my endless list of problems everyday, but showing a bit of concern for people you supposedly care about isn't that difficult. I've found that as time has gone on, most people don't even ask me anymore. As for the people who are just plain rude, they better hope & pray that someday they don't have to deal with a chronic health problem because I believe "what goes around, comes around" and they could very well end up being treated with the same insensitivity they've shown to others.

I have found these forums to be the best therapy around. Typically, I'm not the type of person who would be comfortable doing this type of thing, but opening up to people who deal with the same situations is often the only thing to keep you sane when other people around you try their best to support & understand, but they really can't fully since it's not THEIR health being affected.

Off subject James....are you having flooding problems where you live? I know you're up in that area. I hope you're being spared that nightmare.

HI James - I am going through this now myself. My old tactic was to ignore, but it wasn't working out for me, because I would be angry inside, loose sleep, stress about it, etc. That was not good for my health.

So my new tactic, that I am working on, is NOT to ignore. If someone says something insensitive to me, I will question them on exactly what they mean, I will want a full explanation of why they said what they said. I will not let them off easy, like I have in the past, letting them insult me or hurt my feelings, without making them face up to the fact that they are hurting my feelings. I decided I will let them know exactly how it makes me feel.

They will probably stop making such rude comments. What do you think? For me it was my mother. And it turns out, she just wanted to make me feel bad, she didn't really want to explain herself at all, or talk about it. So I hope it will stop now that she knows she can't just make any old insensitive comment and get away with it without having to explain herself.

What do we have to loose? Try it, without getting angry, ask the person exactly what they mean, and tell them how it makes you feel. It's empowering, don't be afraid.

Hi James,
That really strikes a chord with me. Twice in the last week I've heard "You should really take better care of yourself" when i know I'm doing everything possible to do just that! Drives me nuts. And I really do need to learn to say something rather than just turn the other cheek, otherwise these people are going to continue to stay idiotic things to me. Actually, when I have piped up to say something, the other person usually comes back with "well you obviously haven't done everything to help youself. My great aunt had bad joint problems and she started taking (some weird herb) and now she's fine." Arggghhh How do you argue with that kind of logic?

James, it really is hard to know how to handle people like that. Sometimes they are well-meaning, just dumb about how they show it. Other times, they're just plain jerks and not worthy of a second's notice.

And that's the thing. You know all that you are doing, so reinforce that within yourself. If you are confident that you are doing all that you can, then with that knowledge you can withstand anything and let it wash off your back. Not always easy in practice, but with practice it can help.

That said....

I would be tempted to look them in the eye and ask them how big their feet are (or how tall they are, or what their hat size is). When they respond, no matter what they say, ask them, "How could you let your self/feet/head get so big?"

The way I see it, if nothing else they'll either be too confused to respond, or if they are truly well-meaning it might prompt them to ask what you mean. At which point, you can let them know that you have about as much control over what your immune system is doing to you as they had over how tall they grew. It doesn't have to be a combative exchange. Calm is better in this case, I think.

Anyway, that's what I think.

Many hugs,

Well I have to say if I am feeling bad, I really tend to not be very nice or polite to these people. I have had people tell me oh my aunt/uncle has arthritis and took such and such and they are fine now. I tend to just roll my eyes and say 'mine is alot more complicated then that" and then start to explain AS and if they tune out I will usually just say something like maybe they shouldnt be making comments on something they know nothing about and move on. If they are truely interested in me then they will listen to me.. Someone once asked me why I walk with a cane and limp, I just told him I was in a knife fight the other day ( and I say this very sarcastically if they dont seem nice). If poeple are rude or me to me I get rude or mean right back... i dont need that stress.

Angie

James,

I struggle with this all the time. I was recently off work with another yearly lower disc hernia. I had people telling me to take care of myself, people asking me why I was back at work so soon, and how did i do it.
I'm sure most people were sincere, but some people just seem upset that i had a week and a half off. (yay 4 days of barely walking and then walking with a cane for another week!).
I've started telling people that i have a type of arthritis, and then tell them ankylosing spon... if they want to know. I'm tired of explaining myself to people, especially new supervisors. I used to keep my illness to myself but now not so much, because people just keep asking. Last night, I played a scenario in my head where I said, "Listen, I don't care if you believe me or not, I'm sick of explaining [**BLEEP**] to people." (lol, yep, not the least confrontational way to handle a situation)

Anyway, my point is (i'm thinking of one right now),
Standing up for yourself is tricky. Just try and keep it short whatever you say. I just say i have arthirits.

If someone tried to tell me it was my fault, i would first ask for clarification of what they are really trying to say. If it was obvious that they are trying to tell you it's your fault, that's just ignorant, and they probably can't be helped and i might wish them all the best with THEIR problem. I dunno James.

take it easy

Kat - you are so good with words. I really like the "how big is your head?" except I might substitute "small is your brain" and further continue to go after them.

I have dealt with this for years - my response is proportional to my pain level and how much sleep I have had.

I can get real mean - but usually regret it.

Brian

Hi Janet,

My town has not flooded yet, but I think it can if we continue to keep getting the thunderstorms. The nearest place that has flooded shares our river (The Maumee) and is 16 miles upstream, but there may be closer flooding in nearby places any day now. The daily thunderstorms are still coming and posing a threat to flooding. The worst places that flooded are places along the Blanchard River, and I have two doctors appointments on the 28th in Findlay, one of the harder hit places. Their water has receded, but I am not sure of the small towns I pass through along the way. Our river is still at the banks, but it has done a good job at keeping the water flowing past us. It normally doesn't flood until springtime.

The original question can have a lot to do with one doctor in the past. My family doctor has a great sense of humor, and uses it to cheer me up, so his intentions are always good. But my former gastrointestinal doc, openly made fun of me and laughed at me and laughed at what he said, just minutes after he met me. He had to keep leaving the room to have a chuckle after that. Then I had surgeries by the same doc too btw. About 6 months Later, my family doctor referred me to the same gastrointestinal doc for an upper endoscopy, but that doctor told my family doctor I was fine and didn't need to be seen, without even seeing me or speaking to me. This was all about 4-5 years ago and in the past.

Also I had one other doc say it as my fault I couldn't get proper treatment, and it was my fault for letting things get worse. I'm sorry to hear you had similar experiences like this too. At the moment my regular doctors are great, so I just have the problem with some strangers I see often and also a few relatives.

Thanks for the reply.
Take Care,
James.