Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need some emotional support

That is so terrible to hear. People who don't have this disorder can never understand what we go through. I think the problem is that "they" remember being in pain after a surgery or pulling a muscle and recall how tough or how they got through it after two or so weeks. The problem with us is that this isn't just going to go away or that we just need to stick it out like a sprained ankle. I know that I could deal with any of my pain if it was just a onetime thing but what my family seems to forget that it is ongoing and even the small pains really get to me after a while. That is how torture works the prisoner might be able to resit the first few times but eventually they will break.

happy anniversary! i know how hard it can be to be apart from your hubby. my hubby and i lived about 200 miles apart for about 6 years (prior to being married) but i still remember what it felt like to only see him every month or two.

as for your mother's words. i'm so sorry, not only that she would say that to you, but that she would even think such a thing. we always think family, of all people, will understand, but for me, they seem to be the ones that understand the least, and after 11 years, i doubt they will ever "come around". they have said some of the most insensitive things. but hubby has always been there for me, i have some wonderful friends, and i've found this site, so i try to focus on these people instead. still, even after 11 years, the insensitive words sting. i know they love me, but boy, they have a funny way of showing it. and i fourth the idea of the creative use of that cane

sue

Im sick of these things too.

On a holiday with my mother I sat down on the ground (we had been on a days walking tour and i was dead..) anyway I sat down and she started telling me to stand up right away as I was embarrasing her. after nicely trying to explain it to her i reluctantly stood up, when someone asked if i was okay she responded for me saying i was just taking a breather and then kind of tapped me on the back (in a nice friendly patting sort of way.. which is not appreciated with a throbbing aching back) well that put me over the edge as i was in alot of pain and i made a painfilled sound and grumped at her to please never do that again. well the result wasnt good she took offense and didnt talk to me for a few hours and i landed up appologising to her.. :S

i have a point (i think :P) not everyone can understand.. for a long time while i was a child i got told my pains were imaginary and to stop complaining. those sorts of problems in youth seem to build up an "im not telling you when im alot of pain" barrier so to speak.

about your husband.. those things suck.. i spent 4 months away from my bf and will actually never want to do it again. There are some things you can do.. i like video chat or maybe send him a letter via snail mail, he should be trying to do little things to make you feel extra special too! like sending flowers or at least a postcard!! while nothings a substitute for the real thing.. you still need to put effort in! especially considering your having a hard time at the moment.

lots of hugs, Sonja.

p.s. sorry if i make no sense ive got the flu and its turning my brain into mush!

Hey Marna,
Well, crap. I'm so sorry. My husband is at the world series of poker. But it's not our anniversary... If it helps, it's good to miss each other sometimes... most times it just sucks.
On your Mom, don't hit her on the head.... I know, I've had my share. My Mom is the same, I think. And she's a world class athlete... it's her whole identity... she's in the women's lacrosse hall of fame and everything, plays power volleyball twice a week, and bikes several miles a day. great.
But she can't bear to believe I'm sick, so it's her way of coping (to pretend/believe I'm a p*ssy).... it's mean, it hurts, but a lot less now that I understand her. And she'll never change. BUT having said that, ever since I acted more the adult, she has tried to sound supportive. So there you are (where?).
It's hard, but really, how could they ever understand?
And you might want to remind her that she is setting a precedent for how family takes care of each other. Hopefully, someday she'll be really really old, right?

Take care of yourself, your way, (for your kids, too)and
Happy Anniversary!

cc

I wonder if your mother was thinking more of herself than you? Not quite sure why I think that.
Can you perhaps get her to see this site and let her have a look at the search results when you type in "pain"?

I definitely believe you. I always get "You look fine". If your mother lived in your shoes for a week she wouldn't make those comments. You will always have us!

Thanks for the affirmations. It's so wonderful to not feel like a freak!

The husband being gone is the norm for us. He's in the Navy, so I only get him for about 2 weeks a year. We're debating moving with him in the fall, but that would mean leaving the wonder-doc that diagnosed me, so I'm not too sure on the idea.

Mom is a special case. She's 78 years old, and has always believed that she's the only person in the family who's allowed to get sick. She was given 6 months to live in 1975 (advanced melanoma; she lost half her lymphatic system) and has just been too stubborn to quit ever since. She said it was all in my head when I was suicidally depressed and when I was dealing with breast cancer, too. You'd think I would be used to it by now, but it still hurts.

Goodness, how could it not hurt?!!?! You've got an incredibly painful disease and instead of giving you support and sympathy your mother is tearing you down and being incredibly self-centered. I'm so sorry you've got her childishness to deal with on top of your own pain.
*hug*

Hugs and thoughts to you Marna - It only hurts so much when it is someone we care abut...... and the way AS works I think most people wonder if it is in their head from time to time. Some days I can feel good enough to 'run a marathon' and other days everything is stiff and sore. To an outsider the inconsistencies of how we are from day to day can appear that we manipulate it to how much attention we want that day. It is terrible that we have to justify how we are feeling all the time and that people question the validity of our pain. Just anotehr aspect ofthe disease to deal with

wishing you well

Kylie