Of Meds and Martyrs.

Drugs are bad.

Generally in our society, this is seen as simple fact, with a line drawn clearly in the sand. That line tends to blur when you are talking about a chronic pain condition though.

Personally, I love to straddle that fine line like a rodeo rider on a bronc. I absolutely see the need for them at times. I've had a standing prescription for painkillers since I was 17, which I use at my own discretion, and feel no shame or guilt about admitting this. There are days I need to take them to get through work, or to dull the pain enough to sleep, but I have never fully gone through a bottle because it is not worth the long term damage it can do. Most days I take nothing at all, and if I do need something I generally reach for over the counter drugs after exhausting other means of pain relief.

To my mind though, painkillers are absolutely NOT a first line of defense. I've spent so many years listening to people tell me that being constantly on drugs is the only way to function. I can count on 1 hand the amount of people I have met with EDS whom agree with me, because unfortunately, drugs are an easy out for so many of us. After getting a formal diagnosis, the drug question is always the first question asked... "What have you taken to help?" "What should my doctor put me on?"

The ugliest part of living with a disease like Ehlers-Danlos is undoubtedly the people like this, and the broken mindset that accompanies so many of us.  Ask us how we function, and most will proudly give you a list of heavy duty pain meds and meds that counteract the side effects of aforementioned pain meds that reads like War & Peace. Most have a blind devotion to anything that comes from the mouth of someone with the letters MD after their name, and all too many spend so much time reveling in the attention that being so sick can bring them that they don't ever really spend time trying to get better, or at the very least not decline so quickly.

The sad thing is the drugs create a never ending cycle. You take your pain medication, which causes dizziness and nausea. You take anti-nausea medication which causes headaches. You take migraine medicine for the headaches, which causes a decrease in blood pressure. You take caffeine pills to increase blood pressure, which causes insomnia. You take sleeping pills for the insomnia... you see where I'm going with this. One pill after another, after another, ad infinitum.

I was mocked, and still frequently am, when I explain that I would rather just live with the pain I feel all the time instead of taking multiple medications. I still have a job despite it, I go out with friends, I attended public high school with almost no special restrictions (a fact that is unheard of), and I don't spend every day in bed whining and wishing. When I have something slip out of place, I see a chiropractor. I live and die by my bathtub and epsom salt. I find non-weightbearing exercise to keep me strong. I feed my muscle and ligaments all the protein they can handle and supplement any holes in my diet. These are my first defenders, but I am part of an overwhelming minority. Yes I still have bad days when I am too tired and sick to get up, but I plan to have those. I plan all big outings to have recovery days immediately following them, because experience says I need them. I never do multiple giant outings in one day, because I don't have the energy. I know I have to sit and take breaks frequently, but that's okay, because that's what managing is. It's not going to a doctor and getting pills and becoming one big giant side effect.

When I was 16 I stopped talking to every person I met who was my age with EDS because they all insisted that I couldn't possibly have this condition without being doped up to my eyeballs 24 hours a day just to cope. One girl I knew with nearly identical symptoms to me (though she actually had fewer injuries than I did) made a weekly habit of telling me about all the great new meds she was always on, and how wonderful she felt when the side effects weren't causing her to be nauseous, dizzy, fainting, seeing double, et cetera. She never left her house except for doctor appointments, and insisted that she was the healthiest EDS patient there was, and that she was incredibly brave to be facing this disease the way she did. She loved the attention being sick brought her, and made every effort to tell everyone how hard it was. She was a year older than me, and in the 4 years I'd known her had had to give up every hobby she enjoyed because she could no longer maintain any of them. At this point I was in high school, doing every school play, working for the theater department part time, helping with my mother's business, and maintaining a semi-normal social life, but she knew better than me how to cope with EDS.

The best thing as patients we can do is readjust how we look at this disease. We are not normal, we have never been 100% normal, and never will be. It is up to us to come to terms with how to live around it, which for some baffling reason so many of us find shameful. When I hear people trying to completely ignore or dull everything associated with EDS they are doing so much more harm than good. There is a difference between coping and ignoring. I cope. I am always aware of what my body is doing, and how it's feeling. If I'm in too much pain, I don't push through it, because that's my body's way of saying enough's enough. I don't ever see myself being pain free. I know I can't keep up with my friends and all that they can do in a day, so I don't even try. That coming to terms is what keeps me from needing the drugs. I don't need to feel "normal", but I strive to feel what is normal for me, where I can function, and live, and not think about EDS every second.

~Heather