Did you know I’m a drug addict!?

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. 

Post-reduction! Please disregard how crazy I look, I was going on 2 hours of sleep, 7 hours with a dislocation and a whole lot of crying. I was a hot mess by this point. But a happy hot mess at least because my shoulder was finally back where it’s supposed to be!

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10 thoughts on “Did you know I’m a drug addict!?

  1. Wow, the the af? That is so rude. They had no right to treat you that way regardless of what they “assumed” due to previous patients. You were in a lot of pain and that nurse walked out on you? And the doctor didn’t take you seriously? I’m so sorry that happened and hope you never have that happen again 😦

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  2. Syd – I am so sorry that you have to experience such idiots when you are in pain. I want to let you know that we love you and will always keep you and your family in our thoughts and prayers!
    Penny and Buck

    Liked by 1 person

  3. Story. Of. My. Life. And I’ve got more things than EDS (like most of us).
    I’m curious to know what hospital you were at at first, because I live about an hour from UVA and we discussed moving my care to UVA but my POTS doc is head of my team and he is the best around, so it is hard to leave him.
    I’m actually sitting in the ER right now with a probable obstruction in my intestines, and my pain is about a 14, however I’m sure they will start with some oral med, which won’t work (um hello my GI tract isn’t working?! Oh, and I have one of the worst cases of gastroparesis my doc has ever seen, and some rare thing called SMA Syndrome….so sure! Let’s give the chick oral meds…UGH!!) and then I’ll get some lecture about not wanting to do IV meds, blah blah blah. It’s the same thing every time.
    Oh, and the habit of going to the ER? Yep. That too. Trust me, if I didn’t have to, I wouldn’t be here!!! But my doctor sent me, just like they have every single time for the last 4 months. Grrr!

    Phew! Your post resonates with me so perfectly. I feel your pain (no pun intended). In fact, even down to the posterior dislocation of a shoulder. Been there, done that. Hurts like @/&;@/!

    Gentle hugs and spoons, zebra friend.

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    1. I don’t want to name the hospital publicly, but feel free to shoot me an email and I’ll let you know which one so you can avoid it! UVA is great because they have ortho there 24/7 and my current shoulder surgeon is actually at VCU because one of their orthopedic surgeons actually treats EDS patients regularly so he has an actual clue about EDS!

      I’m sorry you’ve had similar experiences with ER physicians claiming you shouldn’t be coming in there. Like isn’t that what an ER is for!? SO frustrating. And even if I was an addict, (which I’m not) would it really be helpful to treat me like dirt?

      I’m actually having surgery next Monday to fix my posterior instability, so hopefully I can stop dealing with the ER’s after that. But let’s be real, when you have EDS, ER trips are just part of life that you have to accept. It sucks, but it’s a reality.

      I hope you start feeling better very soon! I know all too well how awful EDS can make you feel! Much love and I’ll be sure to be praying for you, girl!

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      1. My orthopedic surgeon is at VCU as well! Tom Loughran. He has done my shoulder twice, my knee, my foot, and my hip. He is AMAZING! He also knows about EDS and my EDS symptoms (like many) started showing up as orthopedic issues, so he is my go-to. Now that my health has taken a turn with other things happening, my joint issues are almost secondary, but still very present. I mean let’s be real, we all have days that putting our feet on the ground to get out of bed hurts…but so does laying in bed! Ugh! I totally feel you!

        I will shoot you an email because I am curious about your experiences. Whenever I have to go to the hospital I’m taken to VCU since my docs are all here. The ER is a mess (I’m still waiting…and have waited 8 hours before…) but my doctors are great, so I have to suck it up!

        Hugs!

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  4. This is beautifully written and sums up my experiences completely. I just wish that when I left the hospital last week crying in pain unable to walk being carried by my husband (because a wheel chair was just too much for the ER to offer me), I had the courage to go to a different ER! I was able to see my PCP the next day and get relief, but why must DOCTORS treat us like this?? I even bring my diagnosis letter with me to somehow prove to them that I am not a “seeker”! EDS is hard enough to deal with without the judgement of doctors who don’t know what they are actually dealing with!

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    1. Thank you! And I encourage you to find a better hospital. You should expect the best from doctors and if they fail to give you their best then there is absolutely nothing wrong with looking for someone who will! I’m sorry you have to go through the same things! EDS is a fight every single day and it’s so frustrating when doctors who are supposed to help us make us have to fight even harder! I’ll be sure to be praying for you!

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  5. i get this continuously too (i’m in the UK) i havent yet been formally diagnosed with EDS, but i’m awaiting a referral for some tests. up to now, i have just been told it is HMS. when i was much younger, i even had a psychologist come and talk to me about “why i was making my shoulder dislocate so frequently”. “is it because you’re having trouble at home? do your parents ever speak/touch you in a manner you find inappropriate?” WHAT THE ACTUAL F??? i could have dropped kicked that douchebag shrink (if i wasnt terrified that that movement would have dislocated something!!) these people are supposed to be there to treat our medical issues, not treat us like dirt!! i hope you receive better treatment in the future! thank god for the docs who understood your situation! x

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    1. There are a few good doctors out there, but when it comes to ER physicians they seem to be the minority unfortunately!

      Best of luck and I’ll be praying for you!

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