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

Well said... a co-worker of mine said she knew something was wrong with her son when he said he hurt. I don't think most kids like going to the doctor so when they say something is wrong, something is wrong. Turns out he had a brain tumor! Imagine if that was attributed to being lazy! Really scary stuff.

I went to the doctor as a teen quite often for fatigue after I had mono. They kept telling me nothing was wrong. Same thing as an adult only I get anti-depressants. I may have mentioned this in another post but my doctor actually refused to treat me any further until I saw a psychologist or tried some more antidepressants - one of which I had a bad reaction to - involuntary movements. Very scary stuff, so I refused to take any more so she said there was nothing more she could do for me! She said my depression was causing my back pain. So I found another doc who thankfully sent me to a specialist who found the gene but didn't really help me out too much other than sending me to physical therapy. So after researching (thank goodness for the internet and this website) I asked her to send me to a rheumatologist. Now I have a great doctor (so far anyway - we'll see LOL).

Just ignore those who call you a hypochondriac and are ignorant and have no idea how hard it is to deal with this. A lot of people on this site are a lot worse off than me and they do more than I can imagine. They inspire me and give me hope. So when you don't get any understanding from your family or friends, someone is here for you 24 hours a day and that's the best support you can get.

Well, that's it for now.

Sharon

Pixel,

First, !!! We are glad you are here!!! I know I am a late poster...my apologies....

As illustrated by all the posts, you can see that we have all to deal with this issue in some form. For years I was told that it was muscle spasms, scoliosis (NOT), psychlogical manifestations of stress or my divorce..yada..yada..

Just before my diagnosis, I know my family thought the same...I could see the looks and just missed the whispers. In fact,I know now, my family thought I may have been having a problem with pain killers but I took 5 of a 30 day supply in a year. When I literally could not get out of bed one morning...I yelled at my daughter until she woke up. She called my big brother, who was the staunchest in thinking "There is nothing wrong with her." When he, not so kindly, pulled me from my bed and I screamed and cried (NOT MY STYLE AT ALL), he was taken aback. He was the reason I went to see the osteo that just so happened to room with a Rheumy in college. He knew IMMEDIATELY that I had some form of Spondylitis. That roommate is now my Rheumy.

The thing that I have learned is that information is your friend. Share all info that you can with them. Tell them about KA. Take them to your rheumatologist and ask questions for which THEY want the answer.

I hope your family sees the light soon, Pixel!!! Please post often and read a bunch! And know that KA is THE #1 Support site for AS so we are all here to help you!!

Take care!
Holly

Jeez Kaz, sometimes your posts blow me away, you're so wonderfully honest, thank you for that. and your effed offness at the literature about women and As, oh yes, that p*sses me off no end, my rheumy told me i would "grow out" of AS by the time i was 30 because women suffer so less severely, my [**BLEEP**], when he had to help me into his office because my hip was so messed up he changed his mind rather quickly, the same time saw my sister in law break down in front of me because she was so upset to see me in pain, i'd been in pain for 5 years, but no-one bothered to come to see me when i was stuck at home for weeks on end. blimey, i'm wittering again, i swear if i don't get a good night sleep soon i'm going to drive myself mental, let alone anyone else!

Thanks for the compliment. Sorry about all the typos. My keyboard here at the house has keys that skip and stick from the first two years of the girls formula spilling on it and I never actually rea what I type.

As with most of my posts it was offered probably selfishly in that I suspect I never forgave that Doc. Heck it was 30 or so years ago so I get a bitof catharsis and because hopefully folks here in troubled times see and agree that the best way to change others is to pass on that futile exercise and change ourselves for survival. AS has made me one thing and one thing above all others, a survivor, and a doggone happy one at that. Scared somedays of what may happen next but happy with how I deal with this and proud of who I am despite AS.

As for the Doc, I know him still today and he is a good guy and very good Doc. He had a bad day and unfortunately I don't think any Doc is allowed by some unspoken oath to admit that, "Heck something is seriosly wrongher and I haven't the least idea what it is, my training has left me unequipped to help you."

Since I'm speaking ancient greek today I believe the sin is called hubris and it messes (perhaps not acient greek) with a scared kid or adult's mind.

Hi Pixel,
I am married to Mike (Lemu63) who has AS. When he was first diagnosed and for awhile after that, our famalies also thought he was just not a real "go getter". I even thought he tended to moan more when he realized I was watching him. For the most part now, it is evident that he is sick, but until he had a name for what was wrong, most family and friends thought he was exaggerating or just was plain lazy as you said. It took awhile to adjust and I really hope for your sake that your family comes around. On behalf of the family or those who do not have it but love someone who does, I think a lot of it is denial. They subconciously think as long as they don't acknowledge it or say it's name, then it will go away. The other thing is, if they don't take the time to research and read about AS then they doubt how bad it can really be, because as you know, there are some good days, where you can just about be your old self, then because you felt so good for a moment, you tend to over do it and for the next few days you suffer more for doing it. The other thing is, even with some doctors, when you initially read about AS, it doesn't sound too bad. Mike and I tend to send more people to this site now, so they can read some posts and see that there are people with AS that have it as bad as he does and there are others who don't seem to be in as much pain. I think a lot of people never heard about it either, therefore until they really learn about it, they ignore it. I mean when you hear someone has Cancer or Lou Gerrighs or something, you instantly think "Oh how terrible" but if you say I have "AS" they say, what's that? Then like with Mike's family, their first question was "will he die from it?" and when you say most likely not, the disease itself is not fatal (even though pneumonia or depression or something related to it can be), then they automatically blow it off, like "well if he isn't going to die, then he'll be fine." The other frustration is (in Mike's case) he has a brother who watches medical shows and PBS constantly, so he is always telling Mike what his docs should do and what meds he should take and how it's not that bad...he is one of those people that "one ups you", so whatever his sickness of the week is, it will top Mike's etc (the guy is an idiot). But it's very frustrating for Mike. Anyway, sorry this has gotten so long, but my point is, you are not alone. Just try to keep in mind that ignorance is bliss to most people and their reactions to you having AS is most likely fear of the unknown, therefore it is easier to deny it. Just try to encourage them to read about it, maybe to come to this site and see the different severities of it. Most of all, trust yourself, only you know how you feel and if they can't understand, then it is their problem. Just keep coming here and getting the love and support you need from those who understand, atleast until those you love come around. I know it has helped Mike big time and it has helped me on the other end, not the one who has pain, but is effected by it. Take care of yourself. Keep the faith...oh and I should have said it at the beginning....WELCOME!!! Sheila

Hi Pixel

I don't have AS but my husband Jon does. Luckily he got diagnosed within the first year of starting to get symptoms so we had a name for his problems early on. And it was very obvious that something was seriously wrong from the start as his symptoms were quite severe and very hard to dismiss.

When I told people he had and auto-immune disease they would react with horror and much sympathy. However, if I told them he had a form of arthritis they would brush it off like it was no big deal and say "oh yeah, I get arthritis in my knee/finger/whatever, it's a really annoying". I would feel like slapping them and yelling - that is pathetic and nothing like what Jon is going thru you big ignoramus!!! Of course, I never did that.

So now I stick with the "auto-immune disease which causes the spine to fuse together" line so that people recognise how serious it is.

Chelsea

Thanks so much for your reply (and everyone else too )
Just a little off the subject...is the image that you included with your post on of your own creations?? It's beautiful, I am trying, at the moment to get started as a Graphic designer/artist, and if that is one of your creations then ... I doff my cap to thee ! Pixel XXX

Thank you so much Pixel:

lol at the idea of slapping them in the face ...Pix

Thankyou so much for the welcome, and thoughtful reply...oh I know a few people like Mike's Bro too ... Pix