Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hypochondria Jibes ??

Hi George,
God, you've really been through the mill, and you've had a lot to contend with, ... well thanks for your comments and sharing your story with me,ell with you now ...Pixel

Thanks so much for your comments and time ...Pixel

Hiya,

my ex # 1 does the same and does the least of anyone I know....should see what a headache or a touch of stomach bugs does to her......

Wife number 2 just does n;t accpet that it is that bad until I'm in A&E again and of course "you did n't have to do it!" Far better to stand up for yourself now because as things get worse the consideration does not suddenly switch on!

One thing I've really learned it's far better to pace yourself than push and push when the disease is active...you get more done and also you stay active longer.

Good Luck

David

Hi Pixel, I had hoped to respond to this last week, but busy days at work and Thanksgiving weekend conspired to keep me away.

I've been showing signs of AS since my early teens (childhood if you count lack of energy and 'growing pains'), but I was only diagnosed 4 years ago. That's 30+ years of being accused of being lazy and lacking in self-discipline. One of my teachers once told me that I had displayed the worst level of self-indulgence she had ever experienced. Granted, I had to lie down in the middle of her class (we sat on the floor in that particular class ... long story) because I simply did not have it in me to remain seated, which must have been somewhat offputting. And I would not be diagnosed for another 16 years after that, so we had no idea that I was actually ill.

My psychiatrist once (more than once actually) told me that the fact that I couldn't keep my house clean meant that I didn't have the self-discipline to do so. In fact, I would get home from work and crash, having expended all my energy resources to get through the day. I've been like that for years. And I took everything that I was judged to be to heart. I was working full time, acting/directing/singing in my off hours (sometimes working the equivalent of a 12 to 18 hour day) and still tell myself I was too lazy to clean. Alot of what I accomplished, I did to prove that I wasn't lazy ...

Now, I realize that the people who said those things to me didn't have all the information. I can't get mad at them, since they didn't know any better. However, I do have one friend who lived with me when I was diagnosed, who saw me at my worst, who knows that until Remicade I struggled to keep myself above water on the energy front, and who still decided I was goldbricking when it came to cleaning. That hurts. As much as I love her, I barely call her anymore, because really, I don't need people in my life who are going to judge like that.

Of course, if it's family, it's a different thing altogether. I don't envy you that and wish I could come to your place and shake people to get them to see reason. All I can really suggest is that they come here and learn from those of us (including you) who live with this. Perhaps if your wife can understand a little better, she can explain it to the kids.

Hugs,

As a non-AS'er I can only attempt to comprehend how tough, frustrating, and infuriating(?) it can be.
I know "my" ASer can be very good at hiding her discomfort, to the point where sometimes I forget she's in pain! She's such a trooper, as all of you are I'm sure, I can't imagine having to deal with not only the symptoms of AS, but then trying to best figure out how to deal with the people around you! It seems that you either:
a) hide it as best you can, and have people think you're just being lazy and/or grouchy and/or anti-social or,
b) show the grimacing and slouching and limping and crying and be subject to all kinds of strange looks, awkward sympathies and then the REAL confusion when the flare ends and you look "normal" again.
I know the only way she finally started getting some respect for what she was going through alot of the time was when people would see her on crutches. It's sad, but most people only understand what they can see, and they are quick to forget when you tell them you are in pain if you don't have crutches, or a cast, etc.

I'm not sure what I want to say here, I thought I might have some helpful suggestions as an outsider, but now I'm not so sure. I guess, and this is probably just an iteration of what's already been said, just do the best you can and don't forget us non-AS'ers FREQUENTLY take our health for granted and easily forget others are not so lucky. Someone mentioned showing pictures, that might work, or if you're up for it, let someone see you on a bad day, when you might otherwise hide out. Give them a chance to see what you go through. A true friend will be compassionate and patient and hopefully a little more understanding the next time you have to turn down an invitation or cancel because you're just not up to it.

I think wolverine has just about covered all the bases My family called me lazy and talked about me behind my back in a negative way for years. A psychiatrist told me it was all in my mind/ attitude to life/`free floating anger` ( you bet I had free floating anger!) and put me on anti depressants.
Unfortunately the antidepressents he perscribed were the ones which encourage you to take action, so I did take action, and over a period of 3 years I burnt myself with a ciggie all the way up my left arm and cut myself as well. Now I am pretty severely scarred for life.
looking back now, it seems such a grotesque and stupid thing to do, but at the time it made me feel better, I don`t know how it works, but it does. (don`t try this at home, folks)
I have recently moved house and this was a deliberate effort on my part to get away from my family, preferably for ever. Of course, once I was diagnosed officially with AS they were all so very helpful- couldn`t be more helpful, but where were they before? I don`t think I can ever forgive them now. They don`t know this of course.
One thing that really effs me off as well are the explanitory leaflets on AS- you know the ones `AS is uncommen in women, and usually les painful`
Well whoopie do- that`s going to make the docs beleive you, isn`t it?
Thank God for my partner who has stuck by me all the way, and thank that same God (or whatever it is) for the kids.
I dont think I will ever trust people 100 per cent again- but I`ve found my own safe harbour finally.
Sorry to waffle on folks.
take care.
Kaz x

Still got foks working on the machine and Bruno has kidnapped...errr ..um... garnered some Doc's as volunteers while we get the bugs out of our early models.

I in my early stages have had family members and friends show great empahty and others be callous and ignorant. My AS however manifested itself with physical changes early on so some of the doubters then realized iI was not kidding.

One particularly foolish Doc when I was about 15 told me point blank with my parnets present without knowing a thing about my work ethic or personality said I was lazy and may have some minor pains but was without doubt exploiting these to be a ne'er do well.

The man was and is for most things a good Doc. He on that day clearly had a bad day and even as a ery respectful teen the notion of throttling him crossed my mind. INstead I bit my tongue and nodded knowingly. Told my poor parents the DOc was a fool and they were left without an answer.

Problem with stuff like that is I think I even started wondering a bit. The corollary would go something like this.


he's a Doctor---- I am a teen
he's seen more arthritis and pain cases then I can immagine-- I have no medical evidence of the apin I complain of on x-rays
I think I am exercising vigorously---- what do I compare that to
young people of 15 don't get AS apins like I'm complaining of-- I must be wrong.

I absolutely started wondering if I was a bit of a hypochondriac. Folks who don't appreciate how debilitating our AS is can do more damage than we imagine.

I am working on my sixth hip. Well original two, two replacements and two more replacements before 45 so I suspect I was realy in pain back then. Mainly I've learned that I can't change the minds of folks who don't want them changed and I know more about my body than anyone so I use all the Doc's I can to get info and be the person in charge of my own AS- management.


I am gnarled and twisted in some degree of pain every day but all in all pretty happy. Quite a few folks who still know me now marvel at the things I do and my resilience when maybe they used to be suspect. I don't take their marveliing too seriously either. Some day I surprise myself at how tough I am in this battle those are great day. Other days I know I am wallowing a bit and on those I feel entitled but remind myself to snap out of it.

I gusess what I'm saying is it takes sort of an evolution not a revolution but it is usually we the ASkicker who have to change not the folks who doubt us. They probably should but we do it to survive and hopefully survive happily.

Fantastic post Steve, thanks for sharing this. One thing in your story really set me off:

"Problem with stuff like that is I think I even started wondering a bit. The corollary would go something like this.

he's a Doctor---- I am a teen
he's seen more arthritis and pain cases then I can immagine-- I have no medical evidence of the apin I complain of on x-rays
I think I am exercising vigorously---- what do I compare that to
young people of 15 don't get AS apins like I'm complaining of-- I must be wrong."


Grrrrrr....I believe you have perfectly explained what I consider to be one of the most insidious things a doctor or other medical professional can do to a patient--make them experience self-doubt. To me, that is just inexcusable. Do they think people like going to the doctor? Could he not consider even for a second that NO 15-year-old would go to a doctor and tell a tale of woe like the one you described to your doc just because they were feeling a tad lazy. Teenagers of any age know [**BLEEP**] well that they are not supposed to feel like that at such a young age and that their pain is real. Teens want to do everything their friends do, to be cool, to experience all the "firsts" they are supposed to be experiencing; teens definitely DO not want to have ANYTHING about them that others will consider to be "different" from their peers, not at a time when, as the ad says, "image is everything" (unfortunately). And believe me, going to your doctor and telling him/her that you are expiencing these odd, very painful symptoms definitely makes you Different with a capital D. My god, why can't they think about that for even a second?

I guess I do have to slow down and admit that I am sure every doctor sees every kind of patient under the sun, including malingerers and lazy scam artists, but separating the wheat from the chaff darn well better be a very deliberate process that starts by conceding that, without question, the patient he/she is talking to is tellling the whole truth and that the pain that patient is feeling is very, very real and very, very debilitating Start there, and then work backwards, never doubting the patient until he/she gives you a REASON to doubt them, a REASON to think that lying might be involved. That shouldn't be too hard to do, should it?

Beyond teens, I know that once the human animal reaches adulthood, the desire to fit in slips away in some people and the need to pull scams and take the easy way out rises concurrently (more likely, exponentially), meaning doctors are going to face a lot more BS in their practice and are going to have a legitimately difficult time determing who really is in awful pain or has AS and who is just looking to get a fake workmen's comp claim to earn legal approval. Even knowing that, I still think that every doctor should start at the same place they should start with teens--by believing every word a patient says until that patient gives the doctor a reason to NOT believe. Again, seems simple, but I know it probably isn't with adults.

*stepping off my soapbox, which seems to be taking a beating lately; better get some of those slats fixed*

Again, great post Steve.

Brad

Thanks for sharing all this kaz--I know it had to be painful.

Nice, book-length PM should be waiting in your mailbox.

Hope you're feeling ok these days.

Brad