Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group a.s. sufferer as a male child?

george:

thanks for the note. i was raised in a small town called..victoria. 1 of the nastiest cities around if u're not a tourist. everyone wants to live there, like vancouver, and their happy to push the weaker off. i first left there in /75 to work in the factories in alberta at 15. my parents were church people that had me destined for a military college. when i did not meet their (god's?) expectations i wasd discarded. so much for 'caring' people in the church...i recently contacted them with the a.s. diagnosis in my attempt to trace the lineage of my a.s. and they said ' whatever...'. thats why the bc gov't etc is so screwed...many of these types of 'normal' people live there. powell river is a nice town, i've been their on my field work..fyi, i was properly diagnosed in the usa, bc med only get charging me for spinal taps etc..i used to work within the med profession, i now have even less respect for doctors..


nicholas

hi jeremy

thanks for your note

nicholas

hi sinta


thanks for the note. maybe the non-a.s. wives hear can offer some advice on why many women freak when they find out their 'strong' male has a.s. we're human 2.

nicholas

hi

thanks for the note. yes, i wonder why many women choose to freak out when they find out their 'strong' male has a.s. we're human 2. we're expected to put up with their monthly pains etc. i've dreamnt of living a life without pain, but i know it is a dream and i dont force others to fulfill it, or dump them if they dont. i'm in my mid 40's, and i still end up being flirted etc. with, supposedly i'm not bad looking, yet i've learned to see this a.s. as being a good filter for dating and prospective wives. we're still expected to be financially supportive even if we keep collapsing..

nicholas

hi george:

thanks for your note. u're lucky that u have a supportive family, pls. treasure them. when i've had seizures in the street i wished i had that...i wonder if the fact that my parents are in the church accounts for their attitudes and callousness.


nicholas

hi steve:

thanks for the note. i actually think many people, young or old, know full well when they are being cruel, and choose to do so no matter their justification. i've even seen a lot of deliberate callousness and jokes by doctors behind the scenes when i have worked within the med profession. u're lucky u have family like that, pls. treasure them


nicholas

Hi Nicholas, I have just completed the last of my tests to get a diognosis as to what type of arthritis I have, the Rheumitoligest thinks AS but needs test results to confirm.I am 48 years old and as I look back at my life I see the signs of this AS as far back as age 18,(reletives sent me a picture of myself at 18 and the stoop in my shoulders and upper back are quite evadent) all my life I have always found some other reason for the pain and discomfort i seemed to experiance. I have always had a physicaly demanding job , I am a sheetmetal worker in a shipyard an decided early on that the pain was part of the job.Each time a new symtom came up I found some reason to write it off as some thing else, so here I am at 48 just finding out that something has been wrong for quite a while. Is it the dr.s fault for the delay in diognosis or the fact that I am male and did not want to admit that I might have a problem, this is a guy thing right
we're tough and can put up with the pain. I understand that to be belittled by people around you is a devestating thing to a young person, I have had psorisis all of my life and even now people make comments about how scaley my skin is. I dreaded things like PE in school or going to the pool with friends because of this. I do understand your anger at how some people have treated you. I was lucky and had a group of family and friends that tried to understand and treated me the same as everyone else. There are people out in the world that will judge you by who you are not by what diseases you have, take a chance they are out there. I can't speak for the ladys out there in the world but I am 100% sure that all of them are not like the ones you have had your bad experinces with, I definantly found a keeper in my partner. This sounds corny, but I try to find some good in everone, in most cases its there you just need to scratch a little, the people that back away because of your illness most probable have issues of their own don't let them stop you. Anger is a wasted emotion in my book, there are more important things to expend that energy on like your health and wellbeing. I guess what I'd like to tell you is there are a lot of caring people maybe it's time to let your guard down a have a look.
By the way I was born and still live in victoria maybe you might consider giving the city and the people another chance, things do change over time and it is a wonderful place to live and raise a family.
man this turned out longer than I ment it to , sorry about that.

Rick

Hi Nicholas,... and Welcome to KA!

It is heartbreaking to hear your story. There is no doubt that kids can be very cruel sometimes, but it is the saddest thing to hear that your parents were so unsupportive. I am glad to know you have survived it all and have managed to find our group. Here finally is a group of people who can at least appreciate the physical pain you live with each day, and who will want to help and support you in reaching for a better quality of life.

Your thoughts on spreading awareness by teaching our kids and our communities to treat those (with AS or any disorder), with dignity and respect is a worthwhile endeavour. I only hope that we will be able to coach you that there really are nicer human beings in this world than the one's you've had the misfortune to experience along the way.

I'm lucky to have grown up in a loving supportive family, who try their best to understand my limitations. I don't expect most people to truely understand the pain and limitations unless they have experienced it, but I always expect others to treat me well. It is, after all, not asking very much.

Take good care,

mig

WHOA!!!!

A question being asked here is "Why women freak when they find out about their "strong man" having AS... we're human 2."

It's NOT just women who freak about their "men" having AS. Men "freak" just as bad when they find out their wives, girlfriends, "women" have AS, also!!

There was a recent post about a members husband who signed on under her user name and made a post re: working with AS. This caused ALOT of turmoil for her, and for the other members here. He seems to have a problem with her not working, because he doesn't understand this disease. So SHE is being hurt by this.

My husband was the same way but not for long. Let me STRESS, NOT FOR LONG.

So, please don't think that you or ONLY men are treated unkindly because you have this disease. Women go through the same thing with the men in their lives. This is NOT a "gender" issue.

Stacie

Hi Nicolas and welcome to KA!

You sound so very angry, and it is completely understandable. Obviously, things have not been easy for you and it sounds like you were handed a raw deal when it came to medical care. I wish it had been otherwise for you.

I have been very lucky, because other than the fact that not one of my doctors picked up on the AS 12 years ago when I had my first full flare, I was diagnosed very quickly once they started looking for something. Personally, and I speak only for myself, I have few problems with Canada's healthcare system. It has done my family very well over the years. That it failed you so badly is discouraging.

And that your girlfriend should have a problem with it just plain sucks. I know. I speak from experience. I had to tell my boyfriend to move out last summer in part because of his changing attitude toward my AS. He was so supportive in the beginning. Then, when my illness began to collide with his own (depression), he became quite cruel and made unreasonable demands and flatout told me that he wasn't interested in hearing about my AS. It bored him. The night that happened, I told him to either get therapy or get out. There was alot else involved, but that was the AS part of it.

Fact is that none of us should have to live with this disease. But we do. How we handle it is completely up to us. I'm glad you found KA, because this place and these people have helped so many in pain and angry and confused and frustrated with the system. I hope you stick around for a while.

Hugs,

Kat