Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group how do i explain this to my family??

hi all,
im looking for a good way to explain AS to my family members (dad in particular) and was wondering if you all could recommend some sort of short pamphlet or something? a lot of the websites i come across really dont explain it very well.. i mean, they talk about pain and stiffness but i feel like it is a lot more than that and its hard trying to get my family members to understand whats going on with me. i dont want to paint some awful picture about this disease, but i think it would be helpful and supportive for me to feel like my family kind of gets what is going on. i have not been able to work very much lately and have needed financial support from my dad, which has been really hard for me to ask for.. especially because i dont think he gets how debilitating it can be.
anyhow.. any advice would be much appreciated.

thanks!

kelly

If there's an AS support group near you, I think bringing them to a meeting could be extremely effective.

Kelly - check out the USA AS support group: SAA - spondylitis Association America: http://www.spondylitis.org/
SAA carry educational and information leaflets: http://www.spondylitis.org/store/products_all.aspx
And also run a monthly E-Newsletter and publish many articles.
http://www.spondylitis.org/spondyplus.aspx
Of particular interest are the lists of international published research articles, monographs and peer reviewed papers.

Suggest that you could also phone the association to ask them for help and advice.

The Association - reckon might be yr best starting point -

Having your dad go with you to a few doctors appointments could also be helpful.

I think this website does a better job than any "professional" pamphlet or site i've seen.

I like this article as well. Its long, but seems to capture it pretty well:

http://emedicine.medscape.com/article/332945-overview#aw2aab6b2b5aa


And after 14 years, I find out that they (the family) make fun of me (crack jokes) about the fact that I can't sit in most cars and that my car is so old. They think its funny (as they've never heard of anyone with that problem, so they just think I'm being odd and difficult). Sad that after so much time, they choose to "not agree with me" instead of trying to understand it. Its because I have bone spurs in my neck that press on the nerves radiating from there. I've gotten good at figuring out how to minimize that; i like not being in terrible pain. Shoot me for not wanting to suffer!

Hoping your father is more understanding than my family is.

Mom said the other night, "Don't get us wrong, we love you, but......."

Oy Vey!

Good luck. My family is very un-supportive and it is a topic we just do not discuss. Every family is different though! My friends on the other hand are fantastic, and I have a few that I can turn to anytime for support. Just find someone!

Hi Kelly,

We all feel your pain. Having an invisible but sometimes visible disease is a real pain in the rear, neck, back, ankles, feet but especially your heart. You want them so bad to believe you but they just don't see it. I give out the pages from the American Spondylitis Association
http://www.spondylitis.org/about/complications.aspx

Then I have a small little booklet called "But You Look Good" that I give a long with it. I gave this to all of my family members and close friends. Some won't even glance at it and others will.

I would agree to taking them a long with you on a Dr.s visit. All of these suggestions are great. Good luck Kelly. We are your family too and we "GET IT"! Love and Hugs

Such a great question! Wish I knew the answer!

When people ask me about my raw foods diet, or just don't understand why I really don't want just a "bite" of their cake, etc. I don't feel like they have any idea of the pain I am trying to prevent! Words cannot describe, but know the rest of us totally know what kind of pain you are talking about!

I have been going to a yoga class the past few months, and I am so far behind the rest of the class, oh my! I cannot even lie flat on my back, and it takes me over twice as long as everyone else in the class to switch between poses. It is actually getting a bit frustrating, as the teacher keeps pushing me and I can tell she totally has no idea why I just need to take it slow and not overdo it, as I don't want to flare up my body by pushing myself too hard. ~ I decided last week to finally switch yoga classes to a different teacher, as I have learned overdoing things and pushing myself too hard does not make me feel any better, only worse. And this class seems to add more stress to my life rather than remove stress ~ there are only 2 of us currently in the class, so you can imagine how much extra attention I get during the class! Anyhow, I try to explain that I sometimes feel like a 100 year old lady on the inside, but no one has any idea!

Wish you all the best!

xoxo,
Andrea

I wish i had a answer to your question,but i dont.Most people think i am just lazy and just want to be on disability.Lots of people have said "its just arthritis,Lots of people have it".This is why i come to this site.It is so nice to have a place that people really do understand.
The only one that really cares is my 85 year old mother...I guess it is true about unconditional love...and i sure get that from her.I think mothers are the only persons who gives unconditional love and understanding.

John

Sometimes I think you have to almost put it in the worst possible terms before it hits home, but then again some folk will just never understand. Just the mention of "arthritis" of any kind gets so badly misinterpreted, I'd avoid the word in any form. If I wanted to give someone a hard-hitting explanation, I'd probably say something like "its an autoimmune disorder that is attacking my spine and many other joints, causes incredibly painful inflammation right where tendons join onto bone, leads to bony growths on bone edges that can press in all the wrong places or eventually cause my joints to totally fuse, and where the only way I can get any relief or slow it down is taking some pretty dramatic measures (insert here any of the following: extremely strict diet, or incredibly expensive anti-tnf drugs, or chemotherapy type drugs to knock back autoimmune responses, or the kind of strength painkillers that someone with cancer might have to take). This is nothing like ordinary wear-and tear arthritis".

Hi Kelly,
Not sure if this has been suggested yet, but do your family members, especially your dad, have email? Sending him this link, or one like it, could be helpful:

http://www.youtube.com/watch?v=7Yx9XS7llUo

For me, being clear, honest and open is an ongoing challenge, and sometimes I feel as though I express myself better in writing than in person... but I imagine I might preface the video with a message like, "dad, you've been so there for me while I struggle with my disease. It has been a lot for me to deal with, and I get scared, and I'm glad I have you on my side. As I come to terms with this, I don't always know how to explain AS to you and other family members, but I thought this video might be a way to start. I have a lot of hope for my future, but to be honest, a lot of worries too. Thanks for being there for me, love, ...."

Hope that helps and best wishes,