Reverse Namaskar

EDS Patient’s Bill of Rights

Reverse Namaskar

Reverse Namaskar

The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my EDS was undiagnosed. My experiences don’t seem to be unique. Many members of the support groups I participate in have had talked about similar experiences with new doctors. Because of these issues, I have a very hard time trusting doctors. This is common in patients with Ehlers Danlos Syndrome. The sole purpose of this Bill of Rights is to ensure that my needs are communicated up front, and to discuss them with you so that we can build a great doctor-patient relationship.

1. I have a right to be treated by medical professionals that believe that Ehlers Danlos Syndrome exists. It is hard to believe that there are still people in the medical community that don’t even think hypermobility causes problems and chronic pain. My hypermobility is not benign, and my symptoms are NOT limited to my joints – because collagen is not limited to my joints either.

2. I have a right to be treated by medical professionals that believe that I have Ehlers Danlos Syndrome. This is a rare condition, but invalidating my diagnosis on the first visit means that we can never have a good relationship. I’ve struggled fifteen years to find an accurate diagnosis, and I won’t be treated by someone who thinks my diagnosis is wrong on the first visit.

3. I have a right to be treated by medical professionals who are willing to continue their education to provide support and treatment that is appropriate for my specific condition. EDS is such an unusual set of disorders, the cookie cutter approach to treatment will not work for me. I have tried so many treatments before arriving here that it’s very unlikely that any solution for me will be simple, and as a doctor you must be willing to think outside the box.

4. I have a right to be treated by medical professionals who believe in my complaints. As a patient with undiagnosed EDS, I was often questioned extensively about my symptoms and then accused of being a hypochondriac or malingerer. You must believe that I don’t want to be sick either, and that my symptoms are real. I need to trust you, and a huge part of that is knowing that the trust is mutual and that you believe in my will to improve.

5. I have a right to be treated by medical professionals that do not solely focus on my psychiatric issues as being the source of my problems. EDS causes anxiety and depression, chronic pain causes anxiety and depression, POTS causes adrenaline rushes and tachycardia. It’s all very complicated, and there are psychiatric issues, but they are more symptoms of a bigger problem and should be treated as such. Don’t dismiss me as anxious or depressed without treating my other problems too.

6. I have a right to be treated by medical professionals who are able to admit they don’t have the answer to everything. In order to find new treatments and make progress, it is imperative that my medical team never gives up on searching for answers. Many EDS patients miss being diagnosed because their medical team labels the issue as fibromyalgia or chronic fatigue and then stops looking for new answers. Diagnosing EDS is likely just one piece of my medical puzzle, so it is important that the search for treatments and answers doesn’t end there.

7. I have a right to be treated by medical professionals who take my pain seriously and work to bring it under control. The link between unbroken pain cycles and psychiatric issues in the chronic pain patient isn’t debatable. I realize you are bound by laws and your oath, but EDS is very painful and often requires use of strong medication and other pallative interventions. If you don’t believe in the severity of my pain, if you don’t have the resources to treat my pain, if you think I am drug seeking, tell me so that I can find a doctor who is able to help me.

8.  I have a right to be treated by medical professionals who respect my intellect and knowledge about my disease.  Because EDS is a rare condition, we are much more informed about our medical issues than your average patient.  We live EDS every day, some of us research our conditions every day.  Unless you are putting in the same number of hours researching my issues, please don’t dismiss me when I come to you with a specific concern.  I am open to being wrong (and if it’s a bad thing I *want* to be wrong).  Please explain to me why I am wrong though, so that I don’t need to worry.  My disease has made me capable of understanding things that your other patients might not understand.

I know that YOU were not one of the doctors who let me down. I’m not blaming you! My case is complicated, and I definitely don’t expect you to have all the answers. I realize that I am the sort of patient that can scare a doctor because you can never make me well again. But, if you are willing, I will do my very best to start our relationship with a clean slate, even though I’m scared. If you give me a chance, I promise I will give you one too. You might not be able to cure me, but together we can make me better than I am today – and I really need your help!

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18 thoughts on “EDS Patient’s Bill of Rights

  1. Well said! I’m really impressed…I have wanted to articulate this struggle for people and it is so difficult to explain. You have done it respectfully and truthfully at the same time. Thank you; this was really therapeutic for me to read. I’m have EDS 3 and POTS. 🙂

  2. Pingback: Attention New Doctors – An EDS Patient’s Bill of Rights | EDSAwareness.com

  3. I lost such faith in doctors when they treated my Dad so bad and he had an (Vascular) EDS diagnosis. They still treated him like a fake. But I got even more fed up when the docs treated me like a pain just because I wanted to be tested for EDS and understand my illness etc…So I put off going to the doc because how she treated me. Even my new doctor doesn’t help much but at least I was able to get tested. I don’t have EDS praise the Lord but still it’s obvious no one wants to look into what is causing my health issues at such a young age.

    • I wish I had some sage advice to give you in terms of having faith in doctors. I had a first appointment with a new therapist last Friday, and when he asked me what I wanted from therapy – the first thing I said was “to learn how to trust medical people a little bit, even though I *know* that I will continue to be treated poorly sometimes”. It would be one thing if getting a diagnosis meant I could put that behind me and have trust that every doctor will take me seriously and treat me with compassion from here on out.

      It’s not true. I already know it. It already happened. How do you establish trust with a doctor when other doctors are not treating you well?

      If anyone finds any answer to this, please share with the world ❤

  4. This is very well thought out and well stated. After what I’ve been through with my decades of invisible pain, caused by undiagnosed EDS (until 2011), these terms seem perfectly reasonable to me.

    You’re right – we’re scary for some docs, and even depressing, but not for all. If only the route to finding the right doctor wasn’t strewn with so much unnecessary pain. Presenting your “Bill of Rights” right up front would certainly cull out all but the toughest, yet most compassionate, docs. Only those will have the empathy to relieve our pain however they can and the persistence to stick with us through our flares and crises.

    My current doctor respects me and works with me, much as you’ve outlined, but she’s definitely not the norm 😦

    -Zyp

    PS I hope you’ll still get notifications from this blog because I’d like to re blog some of your posts on my http://EDSinfo.wordpress.com blog – I really enjoy your writing. I just heard about your registry and I’ll be promoting it on my blog as well.

    • Thanks for the kind words, Zyp!

      I have to find a new Primary doctor soon, and I don’t think I’d have the nads to actually show that to a doctor until I knew them fairly well (and it’s probably pointless by then). I keep running into the problem wher I get a referral, but can’t find a specialist in the field locally that is aquainted with Ehlers Danlos Syndrome.

      We just paid the next year of fees for edsregistry.org, and that hurt a bit, since there weren’t any discounts on the 2nd year auto renewal. I wasn’t proactive, maybe I could have gotten a discount if i had caught it before the auto. We’re fairly broke since I haven’t worked for two years and am not getting any public benefits. We just manage to get by, being frugal usually, but hubby’s startup job is getting behind on his pay.

      I’m sorry to hear that you had a long road to diagnosis, too. How did you finally manage to get your mystery solved?

  5. To help with your costs, perhaps you could put up a PayPal Donation button on the site?

    When I suspected that my constant pains and lifelong strange physical symptoms were EDS, I researched it and found two PubMed articles that document all the symptoms. I used them to make an exhaustive list of every one of my symptoms, experiences, and family history that matched the description. I ended up with a 2.5 pages MSWord doc including a couple of pictures of my scars and loose skin.

    With that document of evidence in hand, my GP agreed that EDS seemed to explain all the symptoms I’d been complaining about. So I asked for a referral to a geneticist and sent them my document before my appointment. I had to wait 6 months, but the appointment was short and it seemed they diagnosed my EDS mainly from what I’d written.

    Here are the articles with a complete listing of EDS Hypermobility type symptoms:

    Gene Review: Ehlers-Danlos Syndrome, Hypermobility Type
    http://www.ncbi.nlm.nih.gov/books/NBK1279/

    Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

    I was also able to file for and get SSDI myself, by continuing my practice of documenting everything. I not only sent years worth of files from my multiple doctors, but also a month’s worth of my detailed health diary, which includes notes of my symptoms, pains, activities (or lack thereof) and meds from the time I wake up until bed. A month’s worth came to 2.5 single-spaced pages! I also had my therapist and good doctor send letters of support and had a good Friend fill out a copy of the functional report. My plan was to overwhelm them with pages and pages of documented misery.

    I hope you can be diagnosed and get on disability too – after years of “no way, not me” it was such a sad relief. It took me over a year to adjust to and fully accept being unable to support myself or be independent, but by now I’ve found other ways to contribute to society, so I no longer feel so guilty about getting SSDI.

    -Zyp

    • I would love to see samples of packets people put together on their own. It would be nice if we had a repository for such documents. I think lots of people could be helped by taking guidance from successful cases if they are applying for disability.

      I think we will have to put up a pay pal donation button on the site unless our financial status improves. The last bill was $85, and I probably should have spent the money on finger braces to moderate the message boards and live chat we’re planning to install.

  6. You may have already said and I missed it, but will you allow us permission to print and present this to medical professionals it if need be? You’ve done such a wonderful job of articulating some very important points

    • Feel free to use this material as a way to start a discussion with medical professionals if you think it will be helpful to you. I don’t mind if people print this out (but if you post it online, please link back to the original).

      The only thing I want to say, is that I don’t know how well some doctors would take this. I have been told, by a number of people, that there is a still a lot of anger and frustration evident in this writing. I can’t deny that I felt both of those things when I wrote it, and that I still do. I did my very best to eliminate as much of the anger as I could, but it is quite possible that you could get the opposite of the reaction you hope for. I guess all I’m saying is, I don’t want to suggest that anyone uses this for any specific purpose, and I don’t want to be responsible if it impacts someone’s care in a negative way when they do.

      That said, if anyone does use this, I would be interested to hear what your experience is. I think if I were to ever discuss this with my doctor, it wouldn’t be on the first visit for sure!

      • I fully plan on taking this with me to my next slew of Doctors appointments, thank you for putting it directly to the point. We need that. too much beating about the bush. Thanks for posting, I didn’t feel so alone after reading 🙂
        Crystal Hird

  7. Wow, I haven’t fully read everything I’m just so excited to see someone in my area that knows the struggle. I’m having the HARDEST time with doctors & confirming diagnosis, however I’ve had at least 6 say they believe this my situation due time extreme injuries, health issues & the… HYPERMOBILITY with chronic pain. Can you see my email? Maybe we could talk, I’m struggling terribly in Between multiple rheumatologist with “my hands are tied”, PCM telling me I need a geneticist, now I have to see a hand surgeon because I “sprained ” my wrist, but I’m sure you are accustomed to standard minor injuries being exacerbated. I’m sorry, to pour my heart, I just have to get a proper diagnose to get the proper help & support from my DH’s command.
    Thank you for sharing your struggles, ❤
    Allison

    • Hi Allison, you can contact the San Diego EDS Support group at ehlersdanlossd@gmail.com for more info if you are local. I monitor that mailbox, so it’s at least a good way you can connect with the local support network.

      We have an event this Sunday, actually. If you can contact me soon enough, maybe you could attend!

  8. Pingback: EDS Patient’s Bill of Rights (again) | EDS Info (Ehlers-Danlos Syndrome)

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