What $50 Buys When You Have a Rare Disease/ Disorder

About a year ago, I went to a new doctor. My hip was dislocating, and my primary doctor thought I needed to see a specialist. The specialist was the “new doctor,” and let’s just say I was not impressed. I waited a couple weeks to see the doctor (by which point my hip pain went from excruciating to simply quite painful); I paid my $50 co-pay to see the specialist. I had the x-rays and preliminary tests the doctor requested. I followed the rules. I was as prepared as I could possibly be as a patient. I went into that appointment feeling as though I was holding up my end of the bargain wonderfully.

I wasn’t prepared for the doctor to fail me completely. Here’s what happened. The doctor talked to me for five minutes and made assumptions. When I told him I had a rare disorder called Ehlers-Danlos Syndrome, he nodded and said he had researched it. I told him my hip seemed to be coming out of socket. There was horrible pain and instability. When the hip was out of socket one leg was longer than the other, and the foot of the longer leg was turned to the side and would not face the front. The doctor chuckled and said it was impossible that I had handled a dislocation without going to the ER.

Have you even met me? I have EDS! I pop dislocations back into place daily. I’m asking for help keeping this darn hip in place- not asking for your judgment about whether or not this hip is actually dislocating. The doctor went on to tell me that during his research of “Eglers-Dallos” (What? Seriously, dude? No one even gave you a pronunciation guide?) he had never come across any data that showed that patients had pain or dislocation associated with the condition. He told me that if I really felt I was in that much pain he couldn’t help me, and the cause could be more psychological than physical pain. Seriously, Dr. Deficient, just because you don’t understand my illness, that doesn’t mean that I am faking it- or that it’s all in my head. (By the way, even if it were all in my head, you have a responsibility to me as your patient to assist me in getting help.) It means you need to educate yourself more. It at least means you need to do some serious work on your bedside manner. Did you skip that class in medical school? Are you kidding me? I paid fifty dollars to be laughed at and shamed?

Herein lies the problem for those of us with rare diseases/ disorders. Few doctors are knowledgeable about our illness. We are forced to play a guessing game of which doctor will give us adequate care- and which doctors will brush us off because they aren’t educated in our condition. Ehlers-Danlos Syndrome is somewhat rare- and proper physician education about the syndrome is even rarer. I understand that. I don’t expect every single doctor to understand my condition. However, I do expect all medical professionals to listen to me. Trust me to be an advocate for my condition. It is completely fine with me if you Google my disorder. I promise not to judge you for not knowing. However, if you make me feel ridiculous and silly when I am trying to explain my condition to you- that’s not okay.

Here’s the embarrassing part of this story- I didn’t say a word. I felt like he was accusing me of lying or at least exaggerating, and I was so ashamed that I couldn’t plead my own case. Even though I at no point wanted or requested pain medication, I felt as though this doctor believed I was just seeking narcotics. I was embarrassed. I felt criminalized. I left that appointment and sat in my car and cried like some kind of victim. I allowed that to happen. I am educated about my disorder, and I had every right to stand up for myself and tell that doctor that his “Eglers Dallos” research was wrong. But I didn’t. I nodded my head and said “thank you” and “I’m sorry” then cried in my car. Stupid. Just stupid.

For those of us with rare disorders, this is what we can expect in exchange for our co-pay, and that is not acceptable. This is why World Rare Disease Day matters so much to me and others within the rare disease community. On this day, we get to make a little noise for the disorders that few in the medical community discuss. We get to inform those on our social media and in our day to day lives what our disorders are all about. We get to spread awareness, so that in the future maybe other sufferers of our illness (and other rare diseases) won’t feel like a victim due to their doctor’s lack of understanding.

I am not bashing the medical community in the least. I have had the pleasure of meeting some fantastic medical professionals- doctors, nurses, physician’s assistants, etc. I am so grateful for the caring and considerate people I have met through various medical procedures and appointments. I am saying, however, that we as patients have to stand up and be our own advocates. Every doctor has a responsibility to listen to us- and every member of the rare disease community has a responsibility to make themselves heard. So, do me a favor, friends. This World Rare Disease Day (February 29, 2016) educate a friend, a family member, or your social media followers about a rare disease that is near and dear to your heart. I’m not asking that you share about Ehlers- Danlos Syndrome specifically. Share about Wilson’s Disease. Share about Charcot- Marie- Tooth Disease. Share about Retinitis Pigmentosa. Share about a disease that affects someone you love, because that person you love deserves a lot more understanding than what they’re currently getting for their co-pay.

Peace, love, and health.

** By the way, friends, I was eventually vindicated for my terrible doctor experience. Another specialist ordered an MRI of my hip. She found that my hip labrum had degenerated and was not capable of keeping the joint in socket correctly. Surprisingly, this new doctor went to medical school with Dr. Deficiency (not his real name- that was just the kindest thing I could think to call him) and sent him a report of her findings.

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13 thoughts on “What $50 Buys When You Have a Rare Disease/ Disorder

  1. M

    It sounds like we saw the same jerk for the same thing. I saw a hip specialist after a subluxation, he didn’t even examine me, telling me that what I described was impossible. When my husband described the position he had seen my hip in before I’d fixed it, the doctor told him I must have been faking that.

    Life with EDS.


  2. Patricia Jackson

    So happy the educated doctor sent him the report….would have loved to have seen his face when he read it. I am so thankful for my primary care doctor, he has been my doctor for over 18 years and will tell anyone the struggle is real! I too have come across a few of quacky doctors, I just have to say crap on him! Crap on these doctors for not listening or believing. Such a waste of money and tears!!!


  3. beciairene

    I have been fighting so many closed minded doctors with my EDS and POTS, that I’ve literally lost count. My doctors didn’t even think to consider EDS with me until I dislocated BOTH of my hips at the SAME time, and then all of the sudden he couldn’t say “get thee to a genetics Doctor now” fast enough. Of course, when I told him I was doing physical therapy already, I didn’t drive and couldn’t secure enough transportation to go to the physical therapy office three times a week, he ditched me and claimed I wasn’t following orders, so he didn’t want to treat me. Never mind at the time, I was in a nursing home doing in patient physical therapy, doing the same things I was taught when I could go to the office (and with my POTS, they didn’t really do anything I wasn’t already doing at home, because I couldn’t stand long enough to do anything else). All of the sudden, all the hard work I was doing, was just invisible to him.

    I had one doctor who once told me I was making all of my POTS issues up, because I wanted attention away from my dying mother. Literally, that was in the treatment notes! She agreed to do the tests because “you can’t fake tests results”. Yep, they were positive. They were four days of literal pain and overwhelming sickness, and they were positive. Doctor decided my doctors down home could treat me, and let me go. Well, if they could treat me, they wouldn’t be the ones sending me to the big wigs, right? That was right up there with the one who proceeded to tell me “I’m the one who went to medical school, not you.” Yeah, I pretty much lost it at that point.


    1. tiffanyrearly Post author

      Oh good grief! I’m so sorry you were treated that way by so many people. Keep your head up. I’m sure you know this, but you deserve better. My hope is that some day rare disease/ disorder patients are treated with more decency and respect.


  4. Nata Etherton

    Thank you for your insight and your posts. I also have EDS, the Hypermobile type. I am sorry Dr. Dimwit (oops…Dr. Deficient) treated you with disrespect. Would you consider letting me post What $50 Buys in our online support group, Cincy Zebras? Thanks for considering my request.


  5. Pingback: Awareness Months Matter | CrazyChronicLife

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