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Chronic Disease

Living with Ehlers-Danlos Syndrome: “Sometimes I just don’t have it in me to be inspirational”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from previous contributor Michael Bihovsky.

I have a connective tissue disorder named Ehlers-Danlos Syndrome. It’s a genetic collagen defect that results in super lax ligaments and tendons, creating frequent joint dislocations, cartilage tears, chronic muscle spasms, and much more. May is Ehlers-Danlos Awareness Month.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies

Usually I take this opportunity to say something inspiring, about how my illness has changed me for the better and given me a clear purpose in life for both the work I do and the person I want to be. While all these things are true, the fact is that sometimes I’m in a physical state where I just don’t have it in me to be inspirational. And that’s all right – inspirational words are meaningless without the context of genuine human struggle. So, if you’re interested – and if you’ll bear with me – I’d like to take this opportunity to talk about EDS in its rawest sense, and to do my part to tell you about the very serious disease it is.

When I was a child, I got sick… and I never got better. And I never will. When I was finally diagnosed with EDS, it was made clear to me that there was no cure for my condition. The best we could do was try to manage and slow the symptoms – symptoms that were pretty much guaranteed, in the long run, to get worse. I have done the best I can with this knowledge. I’ve tried to make the most of the life I’ve been given, and whenever possible to keep a smile on my face and hope in my heart. But it’s been very hard. Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.

EDS is considered a rare disease, but every year the suspected percentage of those afflicted rises dramatically. The disease is notoriously underdiagnosed because doctors themselves don’t usually know about it, and are only able to start diagnosing patients when a textbook case (such as myself) walks into their office and physically demonstrates what it is. The devastating irony is that EDS is actually one of the simplest diseases to diagnose – all you really need is a protractor, and an online guide to a system of criteria known as the Beighton Scale. Then take this to your doctor for confirmation. When I performed these tests on myself a few years ago and then went to my doctors asking “What do you know about Ehlers-Danlos Syndrome?”, the deer-in-the-headlights look was as unanimous as it was unnerving.

So for anyone out there suffering from chronic pain, or other strange symptoms, please look into this. Or if you have a friend in physical distress, please pass on this information. EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.

To the many people out there reading this who have EDS, or any other chronic illness, “invisible” or not – thank you for being my brothers and sisters. Take care of yourselves, and take care of each other. And remember that healing others may very well be the clearest path to healing ourselves.

Michael Bihovsky is a musical theater composer and performer, and an “invisible illness” advocate. He is best known for his viral YouTube video “One Grain More,” a musical parody of Les Miserables about the plight of the food allergy community. Michael has also written an original musical, “Fresh!,” which tells the semi-autobiographical story of a group of college freshmen overcoming physical and emotional adversity amidst the craziness of college, and he is currently writing a book titled “Live Because: The Philosophy of the Broken, and the Journey Toward Wholeness.” For more information, visit www.livebecause.com.

Previously: “Live Because:” Living a fuller life with chronic illness

8 Responses to “ Living with Ehlers-Danlos Syndrome: “Sometimes I just don’t have it in me to be inspirational” ”

  1. James Nielsen Says:

    Good read ! Chronic illness sucks!!!!

  2. Lisa Says:

    Great read!. I got sick at 15 and wasn’t diagnosed til 39, too late to protect myself. But my kids also have it (my son is a maybe yes so I say protect yourself like it is a yes). My daughter is the most hypermobile. I could really relate to the waking up to our bodies comment after dreaming of who we were. It reminded me of a line of a song “I’ve had my moments, days in the sun, moments, I was second to none, moments when I did what I thought I couldn’t do, looking at me now you might not know it, but I’ve had my moments.” It always comes to mind when I have to use my cane & handicapped placard. Not inspirational feeling either.

  3. Konnie Says:

    I’m an EDS sister and I thank you for sharing what is often difficult to communicate. I’ve had one brain surgery for Chiari Malformation caused by my EDS and am traveling to Maryland in July for fusion to stabilize craniocervical instability. Dr. Fraser Henderson is my surgeon.
    Peace, friend.

  4. Sarah Says:

    CALLING ALL DOCTORS!
    You should be aware that this connective tissue disorder is NOT THAT RARE, latest research is pointing to its prevalence being as much as ONE IN TWENTY PEOPLE. It’s just massively underdiagnosed due to ignorance.
    Every doctor should be familiar with at least the basic following diagnostic criteria to spot the common hypermobility form:
    http://www.ehlers-danlos.org/component/content/article/2-uncategorised/130-diagnosing-hypermobility-eds-heds
    It’s NOT just stretchy skin and hypermobile joints, which is probably as much as you were taught. I don’t even have stretchy skin and I absolutely have EDS.

    EDUCATE YOURSELVES on the different forms of this genetic disorder.
    I and countless thousands like me spend most of their lives suffering without a diagnosis or help. This should not be happening. I diagnosed myself then got it confirmed aged 44.
    And please do not fall into the trap that so many medical professionals fall into that because this cannot be cured a diagnosis is not important. I’ve turned my life around now I have educated myself on managing the many symptoms and working to minimise the damage it can cause.

  5. Kim Says:

    Thank you for writing about the challenges – I remember so very clearly the first day that I tried and tried to get out of bed to go to work but everything just felt so disconnected and painful – AND THEN the words for my boss…It is great when we can give back and the boost you get from helping others helps you go a little further but, there are days when I cannot give to myself let alone others – thank you so much for acknowledging that and making it be okay. Life with Ehlers Danlos poses so many challenges and we zebras need to travel in herds so that doctors and other medical professionals will turn to see us and stop assuming hoof beats equal horses – always. Best.

  6. Tammy Says:

    Please, if you are a doctor, please take half an hour, or even ten minutes and read about what EDS is.
    It isn’t ‘the stretchy skin thing’ or ‘the wobbly joint problem’
    It’s peoples lives, their families lives, and our communities that are affected by blatant ignorance of this condition and unwillingness to learn about it in any greater depth than surface keywords that keeps the mystery alive when there are very real, specific symptoms that people with EDS need medical support and help with. We need you to be doctors, help us properly, believe us, and not dismiss us – we don’t want attention, we’re not neurotic, we have EDS and you need to know what this means.
    Please don’t get blinded by the headlights and just stand there blinking – please use your eyes to look into the research and information and away from the headlights and start to help people who need you. There are more of us each and every day.
    Thankyou.

  7. Linda Klump Says:

    Holy cow! I have been on a horrible and difficult odyssey with my 3 daughters. Especially my youngest who is 4. We have been going to a genetic doctor for 2 years and still haven’t gotten a definitive diagnosis; but many diagnoses that have never “fit” into a specific syndrome or disorder. All my girls have been diagnosed with hypermobility syndrome (among other things) and no kidding, my 14 yr. old just had knee surgery 3 weeks ago and my 12 yr. old broke her ankle last week (its her 4th broken bone). I feel like all of the ‘growing pains, dislocations, broken bones, scoliosis, mitral valve problem, orthostatic hypotension, and my grief fit in with EDS. Thank you for this insight because I feel like I FINALLY have some answers. I am definitely talking to the specialist about this! I have felt so alone on this journey.

  8. judith ritz Says:

    Is there a specialist at Stanford Hospital that you recommend?

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