Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hypochondria Jibes ??

I was only diagnosed 2 months ago (suffered for about 14 years, getting worse as time goes on)but still having to put up with jibes from my family, moaning that I am just lazy, they don't realise that things are just too painful to do sometimes, and other times they take me longer than it would take a healthy husband/father...Does/has any one else have to put up with this...and if so how do you cope?? At the end of my tether

Pixel,

I am sorry you are having to go thru this...

It is really sad when ones family does not support them.

Alot of the disease has to do with flares, stress ect...and you staying in an upset state of mind just makes it worse.

I am lucky that now after 15 years my family I think finally understands but I just had to get where I toughened up and if I didn't feel good I stayed home, or in bed...look out for myself because only I knows what my body can handle.

The sad thing is with this illness other than a limp, some extra weight from the steroids I look perfectly fine.

Good luck,

Lisa

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

Thankyou for putting so much time and effort into your reply
Pix XX

"The sad thing is with this illness other than a limp, some extra weight from the steroids I look perfectly fine."

I just had to reply to this, I often wish that I looked as bl**dy sh*t as i feel most days, never thought i'd see the day i wanted to look rough and haggered

People ask how i'm doing, I tell them, and they reply saying "well you look great, so it can't be that bad", I feel like taking my gammy leg off and beating them over the head with it!

But i hope you can make your family understand Pixel, my parents are very supportive, my brother not at all, and it really hurts. A friend of his was recently diagnosed with MS, which is awful, but he spent weeks researching it, his wife is running a half marathon to raise money for MS research...he doens't even know what i have wrong with me and it makes me really sad.

Wolverinefan makes some great suggestions, so good luck

Hi Pixel and welcome (I'm new here, too),

Years before I was finally diagnosed with AS some of my family and friends used to make fun of me and call me the "napper" because whenever I had free time that was all I could do-sleep. I can remember them accusing me of wasting my time, not getting enough exercise, being unmotivated and, yes, being a lazy bum. Now that I look back, I was suffering from all these weird aches--backaches, hipaches, headaches and neckaches-- never putting the aches and fatigue together. The biggest problem with this was that I internalized what they said and about me and for years thought of myself as a worthless, lazy sloth (I could never understand where people got their "drive" to succeed. If I made it to Wednesday still functioning I felt lucky).

I was finally diagnosed in '03 and, to make a long story even longer, it has taken quite some time for that diagnosis to seep in deep enough that I can now clearly see myself as who I really am. I was doing the work of people with "normal" immune systems-doing their jobs-doing their hours-doing their lives-living up to their standards all these years while being sick. Not long ago it finally dawned on me that I'm a hell of a lot stronger in body and character than the majority of the population because I was able to continue-I don't think many of my family members and friends would have been able to do what I did in the same condition. Being diagnosed with AS, as devestating as that was,eventually allowed me to see things clearer and allowed me to give myself a break--no--A LOT of breaks when I felt poorly-and allowed me to do it guilt-free (I love my naps now-I love being able to say proudly "I'm gonna lie down for a bit!" ).

Pixel, the first thing you need to do is stop feeling guilty for not being as "fast and motivated" as a healthy husband/father/human being!!! You have a compromised immune system that is causing you pain and a lot of other things that reduces one's stamina. The second thing you need to do, if you haven't already, is sit your family down and educate them on what it means to have AS. They need to understand that you are a sick man and at times you must be treated that way-it's not your choice to be this way-it's just the way it is. And, if this doesn't work, the next time one of them comes down with a bad cold or the flu tell them you want them to mow the lawn or vacuum the house-and when they refuse, simply smile and acuse them of being "lazy" .

***I have to say I've been extremely blessed with a compasionate wife and understanding friends--it took a little while for them to understand that what was happening to me wasn't about my character but my health. I'm a much much much happier man these days .

***All the best to you!

I definately have delt with this both at work and at home. I really feel like if I didn't have back pain my ex husband would still be here. He was very active and liked going out. I just couldn't do it.

I felt like his family didn't believe me that I was making myself hurt by worrying so much. I've had doctors that have told me the same thing, that I was just depressed.

My mother refuses to believe me since it is genetic and no one in her family has that problem. It must be from my dad. My dad says no one in his family has problems like that.

I also feel nervous about losing my job as time and this disease progresses but I have let my boss know what I'm dealing with and that helps. Someone told me "sometimes the known is easier to deal with than the unknown." If I left her to wonder and come up with her own conclusions then she may come up with something that makes me look really bad, so I told her what was going on.

It is really hard when you look normal and hurt so much. Especially if you are like me and try to carry on like normal. They tend to think if I can do something once then it's not as bad as I make it out to be. Just because I'm ok one day and do something that requires a lot of energy doesn't mean I'm better and will be fine from now on. People just don't understand that. It kind of frustrates me when I see those videos of people on workers comp that are "caught" doing yard work. So they must not need workers comp. Sure some people abuse the system but give me a break. Just because someone feels well enough to mow this hour doesn't mean he won't be hurting the next. If he's on worker's comp he probably doesn't have the money to pay anyone and you can get fined if you let your yard go for too long. Give me a break!

Sorry, sensitive subject for me lol!

To cut this long post short, I am finally getting some understanding now that I have found a doctor that says something about me isn't quite right. But in some ways it came too late. I've already dealt with and have lost a lot because people didn't understand. The others have made some really good suggestions... hopefully through education you can find some understanding and compassion.

Sharon

I look perfectly normal and healthy, and sometimes wonder if people look at me and think, "Why does she keep harping on this?!" whenever I say things about AS. But, most of the people with whom I surround myself are either too kind to actually ask that question out loud, or are genuinely interested and concerned about my health.

My rheumy said to me this past Monday,"Well you look really good." When my blood work came back, my CRP was elevated. Well, I knew that. I'm not even sure that my rheumy completely understands AS (I live in a small city and she's the only rheumy here).

Just venting. You started it!

BTW -- welome to KA!!

Paula

Hi Pixel,

That was a great response you had from Brad who has a talent for looking at things from every angle possible. I agree with him that you have to convey to your family the changes that this disease can do to your body and the pain that is associated with these changes.

If you think that showing them pictures might be overkill, than you must make that decision. You may or may not get as bad as the pictures I will let you use. There are so many ways now to try and keep your body straight but it takes perseverence and a lot of it. I just went with the flow and observed my changes every morning in the mittor when I shaved. I didn't have the knowledge nor the wisdom then and neither did my Doctors.

There is no sense in me re-saying anything that Brad covered. He did a good job of it. So I'll leave you with a choice. Go up to the right side top of the page you are reading this on. Click on KickAS.org that is in the top corner. On the page that appears, scroll down the left hand side of the screen until you get to ASKickers storys, click on this and you come to a list of personal stories by present and recent members of KickAS.

Scroll down to George Ilott's Story Part 1 and Part 2. Click on Part 2 and scroll down to the botton of the page. You will see two picture of me in 1983, just before my back surgery to straighten me. There are two more pictures of me below that which were taken a few months after my surgery and the cast was removed.

Use them if you wish. My only condition is that they not be published anywhere without my permission.

If this helps you get your family to understand what AS can do to one's body, I will be happy.

Best of luck.
George

Dear Pixel

As you can see by all the posts, the "its all in your head" thing is a sore spot for a lot of people besides yourself.

I am a Wife-of-AS, and I know perfectly well when I look at my husband what pain level he's at, in spite of him being one of those 'there's nothing the matter with me' macho guys. The problem with rheumatic diseases is that there are no obvious outward signs, until much later on.

A few years ago, one of the KA members was thinking of inventing a machine, which when hooked up to your doctor or rheumatologist, would copy the level and location of pain he was currently having. He thought this would be enlightening and speed up his treatment. Maybe you could borrow it, when completed for your relatives??

All joking aside, welcome to KA. It is a village for AS people and those who love them, with births and deaths, weddings and divorces. And most of all, lots of support. Ask any question you want, there is no such thing as a dumb question. There are people of all professions and from lots of countries all over the world.

take care of yourself, thats the main thing BlueNorthern