Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What do you tell people? Family, co-workers?

For complete strangers, I used to tell them I sprained my ankle. People understand that a whole lot better than a bunch of syllables that sound like greek to them. I did the boot thing, on and off, for years too. It's no fun.

PS your pup is absolutely adorable!!!

Pooch the pup apparently appears to promote preciousness!

Hey Funchef,

Not an easy question... dealing with the work situation is not easy. I was public accountant when I first had AS. I would have to visit clients in town and the worst was sitting in some of their chairs. If I had a client with bad chairs for me, I could hardly walk by the end of the day my hips hurt so much. To combat this, I would bring a small kitchen chair from home that did not hurt my hips. However, this led to questions from client and sometimes jokes when I left... "audit was so bad that you are taking the furniture"

I would tell the clients of my situation, so they were understanding. However, not everyone at the clients knew so for some situations it was awkward.

Best to you on finding answers with work, not always easiest.

Take care,

Tim

Hello Funchef,

I work in a school and when I'm having a hard time I tell people I have a type of arthritis. They are often surprised and curious. I am 43 and work with kids of all ages so when they ask I give answers that are a little more age appropriate. When I got diagnosed last year and started to reduce my hours at work I took the Principal a flyer on it... It was up to her if she wanted to know more - she has been very supportive.
For my family I left flyers or books around the house and they have been good. I think it helps that I like to be active when I am feeling good.
I started Remicade last fall and it has made a big difference. I think my need and results from Remicade made the disease "real" for people I know.

Good Luck,

Beth

I like Craig's idea of "degenerative joint disease" because most people can understand this as potentially serious and likely to cause pain. Something similar to rheumatoid arthritis is probably helpful as well but I've found that the word arthritis makes people assume it's for old people and not very serious. I have RA and tell people that but usually have to explain that I have many affected joints and that it's come on quickly and severely. As I've been using a cane, there seems to be a quick acceptance that this is not a mild condition I'm dealing with. Most people are horrified to see me hobbling on a cane.

Ahhhhhh. Good idea. I still don't know what the best answer is with work or it should even be shared. In Canada, patients have a right to keep their diagnosis private (unless I'm wrong about this). Plus your benefits and insurance coverage may change (I don't have disablility on my mortgage because of the AS diagnosis. They also took blood for insurance purposes, I was honest on the medical history. And I still feel sick that I actually gave an insurancecompany/bank my blood because we bought a house.)
Anyway, it seems common for family to be the less sympathetic overall. Maybe rolling around on the floor screaming (in the character of George Castanza's father on Seinfeld, "I HAVE AN-KY-LOS-ING SPO-DYL-ITIS! PAINKILLERS NOW!"

With people that I meet - I just say that I have bad back, and if they ask more questions I answer appropriately. Close co-workers know that I occasionally have such problems and when I walk like a tin man, they know it is time for blue&white pills. I neither hide nor advertise it, just go as you would normally go with any other disease. Some people don't care nor understand, but it also happens that they might know someone with AS.

Just remember, you're the one that gets credits for ignoring pain, not them for ignoring you.

Hi,
I simply say my bones are inflammed.

Jay

With strangers, I have a rare form of arthritis.

Friends and folks at church (who are really nosy) hear I have a rare form of arthritis that's slowly fusing my bones together, and yes it's every bit as painful as it sounds.

Family hear that I have AS, there is a genetic component and if they start getting back pain they need to get it looked at pronto.

My mom, who has been the most vocal about how it's not that bad, gets to spend the occasional morning with me after I've skipped the painkillers (generally because of other medical procedures, like the biopsy I was supposed to have yesterday). Generally seeing me like that drives home just how painful it is.