So first off, I need to clear up my title. I am most definitely NOT a drug addict. At least not by my own standards, by the standards of my pain management team, by the standards of really anyone who knows what it’s like to live with chronic pain or by anyone who knows me. Unfortunately, to ER doctors who rarely know very much about Ehlers-Danlos Syndrome, I am nothing more than a druggie who enjoys dislocating her shoulder in the middle of the night just to come in and get IV pain meds. This couldn’t be further from the truth. My close friends and family members know how hard it was for me to finally accept that some days I am going to need more than Tylenol to fight back against my EDS. I’m stubborn as hell and I take a lot of pride in the “suck it up” route I choose a lot of days when I’m in pain. It’s just been within the last 6 months that I’ve finally agreed to talk to my primary care physician and rheumatologist about a real pain management program. My PCP has been pushing me to do this for quite some time, but I’m stubborn and to me admitting to needing a pain management plan felt like I’d been defeated by my disability. I was losing the fight. I’m very thankful that I have such a diligent PCP who has researched and gone above and beyond to learn as much as possible about EDS to be the best physician she can for me. She is a true blessing in my life.
While I have a pretty solid pain management plan in place that 99% of the time is enough, this past week I have had the worst flare up I have ever experienced in my life. I literally haven’t done much other than lay in bed with a heating pad on my back, ice on my shoulders and knees and lidocaine patches on my neck. I’ve been feeling pretty rough to say the least. On top of having a nasty flare up, my shoulder decided it couldn’t wait one more week for me to have surgery, it needed to dislocate just one more time! So, in the middle of the night we were headed to one of the worst ER experiences I’ve ever had. We get there and I told them about my shoulder but I kept trying to explain that not only did my shoulder hurt (obviously, dislocations hurt!) but my neck and back hurt almost equally as bad. I tried to explain my flare up but my nurse wasn’t listening to me and literally walked out of the room while I was in the middle of explaining it to her. Then there was my doctor who was skeptical from before he even walked in my room and he wouldn’t order the X-ray I told him they’d need to be able to see it because it’s a posterior dislocation (which he said is too uncommon to have happened to me) and he told me I was fine but if I want he’d be willing to give me a shot of Valium and pull on it a little. Which is really weird that he claimed I was fine because doctors don’t generally do manipulation unless there’s something wrong because that can cause more problems if you’re tugging on something that isn’t messed up. I politely declined his offer as he refused to give me any pain medication (not to take home, just a little right then so I could tolerate him reducing my shoulder) and he lectured me on the “bad habit” I was developing of coming to the ER. I’m sorry, am I just supposed to leave my shoulder dislocated!? I was so over this guy before he even got in the room (I have seen him in the past and he doesn’t have a clue about EDS.)
We left and went to UVA where I was treated by the triage nurse with compassion and understanding that having a flare up and having EDS in general is just a tough thing to deal with and they got me back to a bed right away. They took X-rays and guess what, my shoulder did need to be reduced (that’s medical talk for popping back that sucker back in place!) I was right! The attending physician came in to question me about why I had been in another ER and ask a billion questions about my pain management plan and lecture me on why I shouldn’t be getting prescriptions from multiple doctors. (Apparently HIPAA just isn’t a thing if someone thinks you’re a junkie and someone called them and told them *cough cough, the doctor from the other hospital* that we might be coming there.) And just so this is clear, I haven’t ever asked an ER doctor to send me home with a prescription. I’m very specific that I leave that up to my PCP or orthopedic surgeon. The same doc that was lecturing me just a few minutes earlier had to come back in and say “oh, the radiologist definitely saw something on your X-rays, we’re calling ortho right now and we’ll get you an IV and some medicine.” So another doctor who had rudely assumed I just wanted drugs had been proven wrong.
Apparently chronic illness means you must be a junkie which couldn’t be further from the truth. On a good day my pain is at a 4 or 5, so when I’m at a 9 or 10 I can handle it a little better than those of you that have the luxury of living your life at a zero most of the time. Luckily, the ortho resident that was there was one I knew from my shoulder surgeon’s office. He knew what’s up. He knew I wasn’t pain med seeking and that I just wanted my shoulder back in place. He came in, ordered me some meds and had my shoulder reduced in under 5 minutes.
All of this could have been done at the other hospital if the doctor would have actually listened to his patient and admitted he didn’t know much about EDS, but instead he made very obvious and unfair accusations that I was drug seeking. I even offered to pee in a cup for him, but that wasn’t good enough. Once you’re a druggie, you’re not a person anymore. You’re a parasite that they just want to get rid of. Accusations like these are going to cost people their lives and cause people like me with chronic illnesses to live in pain because they’re scared of the judgment a doctor is going to make on them. So, physicians, nurses, anyone in the medical field and really anyone in general, don’t assume because someone has chronic pain that they just want drugs. It’s unfair, and it’s wrong. I don’t want drugs, I want more than anything to not need to take pain medication but that’s not a reality for me. So please don’t label me as a junkie because I have pain and I use pain medications sometimes. Because I use them responsibly, I only take them when I absolutely need them and I take the amount that I’m told to take. Don’t label me if you don’t understand what I’m living through. Because I’m NOT a drug addict.