It's not that I don't have compassion - I do.

But this one group of people has been messing with me for years. And probably you, too, though you might not have thought about it much.

The first time was in high school, when there was always suspicion about your friends and drugs. Now, this was the 70s - there was good reason for suspicions about friends and drugs! But I wasn't doing any and still found freedoms limited because "well, you never know. Junkies..."

In the 80s, I was an impoverished stage actress living with a roommate in Ft. Lauderdale. Junkies broke in and stole my TV and my makeup bag with my contact lenses (it looked like a purse) and had unplugged the 2 VCRs we had hooked together - I came back with the laundry and they scooted out a window without them (one was borrowed!) One broke in one night and went into my roommate's bedroom and took her purse - she saw him and was terrified. (They also stole my next door neighbors' collection of mostly-gay porn. And some of it was really funny. A great loss...) And they were the reason we couldn't leave windows open for a breeze. In South Florida. Junkies.

That's obvious stuff. But how about this: I had some really bad allergies in Florida and I am a singer. After much trial and error, I found that Sudafed Non-Drying Sinus would unclog me but also allow me to sing. Hooray! I was their best customer when I was doing a show. Then they disappeared from the shelves - they had to be "reformulated". And you know why. Meth. Junkies. (The reformulation never worked for me - here is someone else bitching about it.)

When I had my 3rd knee surgery - a total knee replacement in 2000 - I was given Oxycontin for the first time. Knee replacement surgery is considered the 2nd most painful surgery (hip replacement is number 1), and the Oxycontin was a miracle worker! It took the pain down to a level where I could push much harder in physical therapy. Well, while I was in the hospital, anyway. When I checked out - still in out-patient rehab for many more weeks - I was switched to the much weaker/more side-effects/omg-I'm-so-constipated Percocet. And why was I not allowed Oxycontin? Thanks, Rush Limbaugh and the rest of you junkies!

So now I have a chronic pain syndrome. I am one of the lucky ones. My rheumatologist has been very careful working my way through different meds and we now have one for milder pain, one for I-am-never-going-to-sleep-my-muscles-are-spasming pain, and one for emergency breakout pain for if I sublux a rib or fall and tear a tendon (I've done both). But people with my disorder often end up in emergency rooms because something dislocates or tears that they can't handle (mostly, we just jiggle our bones back together, y'all, which the ER folks never believe), and because we have high pain thresholds, are used to being in pain and we aren't screaming, we immediately get categorized as a "drug seeker!!". ER doctors are called on to apologize to EDS sufferers all the time because they are unaware of EDS and ignorant of chronic pain syndromes in general. One patient tells of a disbelieving ER doc putting her on an examining table and YANKING on her legs - she basically dislocated this poor woman's entire body! And the reason we get treated as "drug seekers" as opposed to people who need help? J-U-N-K-I-E-S.

We have this idiot reporter from the NYT - not a doctor - who has written a book about how bad pain killers are for people. When the courts were looking at changing the laws about certain pain killers, they heard testimony for 90 minutes from people whose relatives overdosed using the drugs recreationally, but only allotted 10 minutes for testimony from chronic pain sufferers and their doctors!! Because? Junkies! (At least the AMA is looking into it now.)

Yes, I know - there are people out there who are more susceptible to pain killer addiction, and having several close friends with addictive personalities I truly do feel awful for them. But there are also people who ruin their lives because they are more susceptible to gambling, alcohol, sex - my best friend died because of circumstances directly related to his alcoholism. But, amazingly enough, even though alcohol, smoking and gambling can ruin and kill without providing ANY redeeming value, we don't treat everyone who orders a drink, lights up a cigarette, or pulls a handle on a slot machine like they are automatically abusers. So why pain meds? Which have huge value to those in chronic pain?

So I'm pretty worn out with junkies - they have messed with my life for too many years. Get off my damn medications and go get a bottle of scotch or some cough syrup or something (Hey! How come they're not restricting Robitussin??). Or campaign to legalize pot - I'm up for that! And can we please educate our doctors so their first thought isn't "junkies!" Let's get that first thought to be "this may be a person in real-but-not-obvious pain, let me take a minute to check this out". Heck, I'll even show you how my elbows bend backwards! Just take a minute to think of us as people first.

I could use a drink.

I'm very lucky - I'm with a partner who (mostly) gets it. It's not easy to "get it" when you see a person on a daily basis who looks perfectly fine but can't do all the things a perfectly fine person can. And gets cranky about it. I try to remember that I'm lucky - that it takes work to "get it". And that he really does work at it. Unlike so many...

I've mentioned the message boards that those of us with rare syndromes go to to share information about what we've found out, ask questions about what might be going on with our symptoms, and vent about problems with doctors/family members/employers who don't understand and don't want to try to "get it". I saw a new post today about yet another woman, married for over 30 years, whose husband is divorcing her because he can't handle the EDS. Her daughter is about to get married and she has 2 surgeries scheduled, but he has had enough and wants to marry her friend. This sounds awful. It IS awful. (And don't even get me started on the "friend"!!!) But I try to remind myself that it takes a very tough person to be by someone who is in pain a lot of the time that they have no power to make better. Another poster said she had to move back in with her mother when her last employer set her up to get fired because he was tired of dealing with her disability. Her mother has her own emotional problems and accuses her daughter of malingering and of not actually being in any pain.

It is natural, when you love someone, that you want to "fix" situations that cause them distress. And it's frustrating to find yourself doing stuff around the house that has to be done that your partner could do before, but now she's sitting on the couch with her feet up (our blood drains to our feet and tends to stay there, causing pain and low blood pressure - most of us are most comfortable with our feet raised, but it makes us look lazy as all hell!) And it's terrifying as a parent to believe that your child is in actual physical trouble, plus there's the guilt that comes with passing on a genetic condition. It's all so fraught!

I'm lucky. My mom gets it. She buys me braces for my feet, pays for my Pilates therapy, and understands that the smaller pains she has - from a condition she never even knew she had - are magnified in me. And I don't think she blames herself too much - she knows it was out of her control.

My wonderful boyfriend is really "getting it" now. He did not sign up for this - it took us both by surprise - and there have been times when he didn't get it and would ask me some stupid (well, to me it felt stupid) thing about "why can't you...?" and I would cry and yell "Because I have f*cking, EDS, goddammit!!!!" (I am not always attractive and lovely ;)) But now he gets it - I think as much as someone who doesn't have "it" can. I'm slower. I lose my balance. I can't walk as far or stand in a line. I sit up in bed lots of nights with muscle spasms (and - god help him - I SNORE! Even when I'm SITTING UP!) I can't jump right up when he calls me because a) my feet may be out of joint and I have to check and b) my bp might be very low and I could keel over. I have that southern belle attitude where I try for too long not to be a bother, and that means when I finally admit that I have to sit down, it means I actually have to SIT THE HELL DOWN RIGHT NOW! But we're both learning. And last week, he bought this:

That is Rick beside a tandem bike. He has his own bike, which he loves, but we started renting the occasional tandem a couple of years ago. It could be expensive, especially because if it turned out I wasn't quite up to it, we had wasted an expensive rental. But I loved being out in the sun and air. So he did the research and bought us our own (notice the extra padding on my seat). He has to do almost all the work - my legs can't handle a whole lot. And when it's hot, I need to stop for water and salt and to put my feet up on a bench for a bit, cos I can get really light-headed and nauseated. But he doesn't seem to mind. And it's given me a sense of freedom that is indescribable!

It's not easy being with me day-to-day. I hurt and I'm tired and I'm cranky and I can't do all the stuff everyone else wants to do. And there are a lot of people on the planet who just cannot deal with that. And I appreciate how lucky I am to have this wonderful guy in my life (especially when I make short-tempered, smart-assie faces at him)! Thanks, Honey - I love you! (And I'm so glad you might have finally found earplugs that will block out my snoring. Egad...)