Hi Pixel,
First off, welcome to KA--glad to see you start posting. As for your question, I don't personally have that problem because my AS is very severe and very visible--I am very bent over still in the low and mid-spine, my shoulders are hunched forward, and my neck is very noticeably bent forward and fused. All of this even looks rather painful, so I don't have a lot of trouble getting people to believe I'm hurting. That doesn't mean I don't have any suggestions for you, however. Others who have experienced this will probably have better ideas, but here's what I've got:
1) Poke around online and search out some of the sites on the web that contain pictures of folks with severe AS like mine. If you use the image search at Google, you should find sites pretty easily, and if not, there have been several posted here at KA, you'll just have to look for them. I would let you use my own picture, but I only have one online and it's here buried in a KA post from months ago. If you can find it, feel free to use that as an example, although I am sitting down and it's not as noticeable. When I say use it, what I mean is this: Once you find some sites, next time those family members are around, take them online with you and show them these sites. Tell them "See this--this is what I'm fighting every day. I have the same disease these folks have, and while mine has not progressed to this level--and it might not ever get that bad if I'm lucky--I experience the some of the same symptoms these folks do and much of the same pain that they feel. Can you understand now that when I say I really hurt, I mean it--I REALLY hurt."
Take this with a grain of salt, however. For people who've never seen how severe AS can become, some of the images can be, frankly, shocking. There is a chance that showing the photos might do more harm than good, as some family members--esp. those closest to you, such as your spouse--might be shaken by the idea that you will soon look like "them." That might make them swing the opposite direction and start treating you with kid gloves, and you don't really want that either. If that does happen, just tell them that what they saw in those pictures, while certainly difficult to deal with, can be dealt with and in fact is being dealt with wonderfully by many members of KA, including myself. Besides me, there are quite a few other members of KA who have experienced the severe kyphosis, joint fusion, and other fun tricks that the disease brings with it, and most of us are leading full, rewarding lives despite our illness. There are limitations, of course, but everyone has limitations of one variety or another, even seemingly "healthy" looking folks. One final note on this idea: There are other pictures available here at KA, but I am not going to tell you who they are of--that's not my place. If others see this post and like my idea and want to make their own photos available to you, then that can be their choice. Some might think this is a very bad idea, and if so, they will let us know here, trust me!
2) If you want to take an approach that is a tad less, umm, radical than number one, or your family members won't join them at the computer, then take the info on the computer to then. You could print out pictures if you wanted to go that route, or you could go to the U.S. National Institute of Health's Medline site and search on "ankylosing spondilitis" to find articles that deal with the disease. Scan through the hits you get to find the articles that most prominently discuss how painful and fatiguing AS can be, and make copies for every family member who has ever given you grief. Highlight or circle key sections and ask that they at least read those parts, even if they don't want to read the whole thing (articles from medical journals can often be very technical and almost impossible for a layperson to decipher on short notice). Maybe reading what doctors have to say about AS will bring them around--who knows.
3) There's always the old tried and true where you simply lose it just a bit and give everyone a piece of your mind (whether or not you can spare a piece--I know I can't!). read the journal articles yourself and then the next time someone calls you lazy, come out with both barrels blazing and dazzle them with medical facts or statistices about much pain AS patients suffer on a day to day basis. Also let them know that the pain of AS can come and go, and that when it is bad, that is called "flaring" and you are experiencing a "flare." Tell them that the literature confirms what you already knew--that there is often no warning about when a flare will hit and/or what will trigger it. Worse yet, there is also no way to know when the flare will end. Make sure they understand that just because you walked from one end of the mall to the other yesterday, it doesn't mean you can do it today, or next week, or next month. Every day is a crap shoot, and what doesn't hurt on one day sure as heck hurts another day.
4) Finally, the most important step you can take is to try to get rid of the pain as well as you can, which is always a primary goal of every KA'er. Take a look throughout this forum and in some of our specialty forums to read about the latest treatment options for AS. These include new pharmaceutical choices that have just become available in the past couple years (esp. the biologic drugs such as Enbrel and Remicade, about which you'll find more info in the separate Pharmacy and Biologic forums that we have listed on the main forum menu); alternative healing methods, such as acupuncture, herbal medicine, etc.; and using diet to control and even wipe out AS pain by putting the disease into some form of remission--this is most prominently done using the No Starch Diet. Many members swear by the NSD plan of attack, and it is so popular here, it even has its forum--just take a look down the main forum menu and you'll find it. The good folks in that forum will be able to answer any questions you might have about the diet and other food-related options. I say that this is your best option to deal with your family because let's face it--if you don't feel much pain or fatigue, you don't have to tell your family that you DO feel pain and fatigue, so everybody wins! You feel good, and they don't have to go through life suffering from some horrible mental defect (which they must have if they believe that you are being lazy and are faking your pain--that's the only possible explanation for people to act that way, right?)
Hope these help. If I think of any others, I'll share them with you.
Brad
