Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The problem with an illness support forum

Welcome to KA!

I have a request for you. I find it hard to read your posts because of the flying birds. Although I think they're neat, they make me dizzy. Any chance you would consider changing them to something else?

Thank you.

Wow. For someone saying they need help from a community of people to get through their illness, I can't even begin to think of a worse way to ask for that help than to kick things off with such a horribly insulting post.

Hypochondriacs? Wish I had known that this morning, when I could have told my opthamlogist that the near constant bouts of iritis I've had for the past two years were simply all in my head. All that blurry vision, redness, and eye pain were simply me looking for attention. Wish I could have sorted that out earlier, as I could have avoided the two cataracts in both eyes that were directly caused by the eyedrops used to cure my imaginary iritis.

And really, if I just could have realized years ago that I was experiencing hypochondria, I'm guessing I could have avoided getting both hips replaced, and, even more importantly, could have skipped that whole, traumatic spinal osteotomy. If only I had know that if I was tired of being bent in half and looking at the floor, all I needed to do was stand up straight! Silly me! And gee, that bowel resection that I was told was caused by diverticulits and exacerbated by the way my organs are being compressed by my bent-over frame was just more unnecessary surgery that lined the doc's pockets. After all, I probably was completely exaggerating the discomfort I was feeling from the free air in my abdomen--which was caused by the perforated bowel--and I'm sure my immune system could have fought off the infection that was sure to follow when raw feces spilled into my system. If only I had realized that I was just complaining too much and that, really, I just needed to "man up" and everything would have been fine. Thank you SO much for clearing all this up--you're spot on here, as I guess I've let the other hypochondriacs on this board talk me into believing I have AS!

Gee, did the sarcasm come through clear enough in those last few graphs? I think it probably did. Dadsp, I really don't know what could have been going through your head when you made this post. This is the second time in your short time here you've questioned whether much of what we talk about is all in our heads (can't quite remember which post you mentioned psychosomatic aspects of illness, but I know you did, because I responded to that one too, albeit in a far more gentle manner). Just what do you really hope to gain from this group if you honestly don't believe much of what you read? I mean, I'm sorry your family had a "not very compassionate environment," but as you clearly haven't realized, Kick AS in fact DOES have a very compassionate environment.

And you know why that is? Because the vast majority of the people here have dealt with anywhere from 1 year to 10 years of being told their AS pains were all in their head, or had to put up with one misdiagnosis after another. Additionally, because the doctor's often didn't believe they were really ill, those same people often had to endure being mocked and even shunned by their friends and family members who did exactly what you did today--told them to quit complaining about a few aches and pains because after all, we all have those, why are you trying to act so special? Or, perhaps they heard ths chestnut: "You look just fine, so I think you're making all of this up.....I just don't think you want to work/play with the kids/walk the dog/go see my parents/have sex with me anymore so you're making up these imaginary pains" (and there are literally a thousand other things I could have used to fill in that blank).

I'll try to give you the benefit of the doubt and think that because you're new here, you had no idea that so many people here had such similar experiences in the first few years after they started experiencing AS symptoms. I'd like to think that if you had known this, you would have understood just how damaging and frustrating your post would be. I mean, good lord, after finally finding a home like KA after years of these problems with doctors, friends, and family, these folks who've had such bad experiences with AS had to come in today and read that one of their OWN doesn't even believe what they post here. I imagine some people felt flat out betrayed. From the clumsy apology/explanation you make at the end of your post, it's obvious you know your post would likely be rather controversial, but I hope now you realize just how truly offensive your post was. If, on the other hand, you're suprised that some folks are so worked up over what you wrote and you think such an outcry is just what you would expect from people who had been forced to "confront" the fact that they are just hypochondriacs who feed off each other's imaginary ailments, then perhaps you still don't get it and should give some thought to moving on to another group.

However, if you do have AS, then I think you would be making a huge mistake if you left KA. As bad as your first impression was here, you'll find that this is a very forgiving group that has one main goal--to make any man, woman, or child who has AS feel at home and to let them know that, finally, they are among friends who understand exactly what they are going through. If you do stick around, I strongly encourage you to attend one of the live get-togethers that KA members have several times a year in many locations around the country. These aren't formal gatherings or conferences, they are just small gatherings organized here at KA on the party/meeting forum (see the main index). The reason I encourage you to attend such a gathering is because I think you'll see the best proof you'll ever receive about just how horrible AS can be. You'll also quickly realize that, as so many of us talk about here, AS definitely doesn't seem to travel by itself, as I'll bet you almost everyone at such a gathering will also have iritis (or be in remission--any group of 10 or more will almost definitely have at least one person in active iritis flare), or Crohn's disease, or irritable bowle, or heart problems, or anemia, or....well, the list goes on and on. For some of these, you'd simply be able to see the physical proof that someone did in fact suffer from this added illness (iritis is pretty hard to miss), but even for those that aren't "visible," I think you'll still end up being a believer because you'll find that KA members are among some of the nicest, most sincere people around. More importantly, you'll see that when KA members get together, what they want to do is have FUN, not sit around and talk about thair various ailments. Hypochondriacs? Sure, they'll be some quiet chats held off to one side where folks whill compare notes about their health problems, but that's about it--everyone is usually too busy eating, drinking, and most of all, laughing and enjoying new friendships, to talk about AS or any other autoimmune illness. Our time spent with other KA members is too precious to waste time talking about what's wrong with us--it's much more fun to talk about what's right with us!

The bottom line is this: you admit that you need help and support dealing with your AS, and as I hope you'll come to realize, you have found exactly the right place for that. And, you'll find that such support is offered up here unconditionally. We all hope you'll become an active member who visits and posts regularly and is quick to offer up support to other members who need it too, but that role isn't for everyone, and I am sure people would understand if your upbringing leaves you at a loss of words when you read the many posts here that ask for support or describe the terrible problems our members experience. But, as I think you will cleary understand after this post, what folks around here simply won't tolerate is having one of their own question their integrity or sincerity, If you find that even after what you read in the numerrous responses to thie post (and I admit I haven't read them yet; I should have before responding, but your post just touched such a hot button I couldn't wait), you still have a hard time believing things the tales of woe you read here, I recommend that you follow the old adage "if you don't have anything nice to say, then don't say anything at all" and move along to the next post. That way, you can find the support you say you need, which is at the heart of KA's mission.

Brad

Hey everybody

Shall we say he's got the message now? I can't be the only person reading who is feeling very uncomfortable about what's going on here. The reason I love this place is for the support given to each other. This whole thread feels like it ought to be on "that other forum" where the unpleasantness is sometimes almost palpable. It's not usually like that here - let's not get drawn in any further, please.

Hi Thomas

I feel for what your going through with your cancer treatment. I watched a dear dear friend try as he may to hold onto life. I cried until I could cry no more, this dear man's will for life was strong. This man 32 all that was left was skin an bone, yet he held on. He loved his family, and thought they could not carry on without him. Even though Dwayne new there was no chance of life, it wasn't til his wife asked him to go to god, that she would be alright, that he finally passed.

I don't wish this for you, I could see you have the will to fight, and it's my wish that you keep fighting, and be cured of this ugly disease.

I don't understand why you want to hurt others.

Hypocondria - extreme depression of mind or spirits often centered on imaginary physical ailments

Monchausin by proxy - usually a mother who lives off of the attention her children get when treated by doctors.

I can only talk about myself here. Am I a Hypocondriac who is in extreme depression of mind or spirits that my aiments are often centered on imaginary physical ailments.

All my DIAGNOSED ILLNESS (HLA B27+ AS diagnosed by ex-doctor - "(I wouldn't have believed you have Ankylosing Spondylitis)", and I have many other AS symptoms (documented). After many months of asking for a Bone Density test - under duress my ex-doctor finally sent me for the test. It came back positive for Osteopenia, borderline Osteoprosis.

I have elevateled liver enzymes (about 7 years now), which now my new doctor believes yet not diagnosed could be NASH, or Auto-immune Hepatitis. I have a cysts in between by disk on my lumbar spine. I have a cyst on my left adrenal gland. I paracardial infusion small amount on my heart. I have lung damage, which is showing mild COPD. I have other severe breathing disorders (Severe Obstructed Sleep Apnea), Bronchial asthma, ongoing bronchitis, and narrowing airway. Diagnosed March 2007 with severe Central Auditory Processing Disoder.) (Ex-doctor didn't believe I had this disorder because I wasn't stupid??? (I am not) I've this disorder all my life, but and maybe because of another auto-immune disorder (cogan's syndrome), it's getting worse. New doctor believes it could be Neurological. (The list goes on and well documented).

I have been told I have MS (diagnosed by Urologist). I have been diagnosed with Sjogrens by my dentist. Now they are looking into Lupus as well.

Not one doctor has said I have extreme depression because of imaginary physical ailments.

As for Munchausin by proxy - My mother (heck I haven't seen her in eight years) and my very dear friends here they don't feed off of my illnesses, they have enough of there own, as do I.

Who (you) like seeing others in pain, does it make your pain less. I am sure that everyone here suffer pain, and deals with it the best they can. Do you think others feed off of the pain of others, your pain, that makes them feel better, I don't think so.

As I have no choice but deal with my pain, without the use of any type of medication, I do have a lot of depression. It's because of this depression that I seek the love, caring and guidances from my dear friends here at KickAS. Without them being there for me, ending my life didn't look bad.

HUGS

Gerri

Wolverine,
As you stated many times in your second post it sure seems you're pleased with what you wrote. It also seems as though you have put a lot of effort in trying to figure me out and my intentions. Simply stated, you're wrong about me, you've over-complicated matters and the same time you've over simplified it all [applause], and you have decided to take other's posts and substitute something they didn't say for something they did. I understand your tactics and do not much appreciate them. If I didn't ask or make reference to the issues I did then I would always wonder and wonder if people knew someone was wondering this. Now I've said it, and maybe at the expense of others (and apparently so) but it's there and not the "elephant in the room."

I am ready to move on...

You know what, screw it, you're SO not worth any more of my time and effort, including the post I originally had here.

Good luck finding the support you need. Doubt you'll find it here at KA, but I hope you find it somewhere.

Brad