My Story

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This time last year I was backpacking through Europe with friends, but now I wake up every morning and have to fight just to be able to walk; and I have to deal with the fact that I may never again get to be that free-spirited girl who was out conquering the world not so long ago.

Last September, in the span of one week, I went from being a happy, healthy college student to being bedridden with crippling back pain. The sudden onset of my symptoms did not correspond with any sort of trauma – I simply woke up one morning with hip pain. The next day my hip hurt so much I couldn’t walk, and by the end of the week the pain had spread to my back, and I was completely incapacitated, unable to get out of bed. My doctors at school sent me home for two weeks of bed rest, and were confident that because I was young and otherwise healthy, I would bounce back. But over those two weeks I got worse, not better, and my family and I began to realize that we were dealing with something very serious.

I was in a state of constant, unbearable pain for six months, and saw seven different doctors, but not one of them could find anything wrong. Every blood test, MRI, and X-Ray came up clean, and everything else about me appeared healthy and strong. Soon these doctors started telling me my pain was psychosomatic, they suggested there was something wrong with the way my brain processed pain, and some told me I simply had to “surrender” to the pain and “deal with it.” The only thing they could all agree on was that there was nothing they could do to make me any better. I was told that school, a career, family, were all things I should not think about anymore; this was my life. Pain was my life now.

On February 20^th, I experienced the most excruciating pain of my life. Even after 6 months of coping with constant, unbearable pain, I was unable to handle the magnitude of the torture. I spent hours writhing in my bed, trying every stretch, every breathing exercise and mind game I could think of, but nothing helped, the pain was too great. I fought as hard as I could but the pain engulfed my entire being, there was not a millimeter of my body that was not racked with pain, and not a nanosecond of relief. Words cannot describe the magnitude of the pain, my own brain could not process the torture, I was completely overtaken. I finally broke down, unable to fight the torment any longer. I began screaming and crying, begging for it to stop, wishing for anything to end the pain; but of course there was no stop button, no end. My mom finally had to feed me a fistful of pills – Oxycodone, Lyrica, Elavil, Flexaril, Motrin – and wait for me to drift off into a drugged stupor. After 45 minutes in Hell, my mind fogged over, but even then the pain was not fully gone, and I fell into a fitful sleep, being awakened by pain and then pulled back to unconsciousness by the drugs. THIS is what the doctors told me I should “manage,” THIS is what they told me to “deal with,” THIS is what the doctors accused me of making up. There is nowhere lower than that, no pain more consuming, no hopelessness more draining. But I survived. All those doctors told me I was weak, but in that moment I knew that I was strong; stronger than they could ever reach, stronger than they could even imagine.

In a final, last-ditch effort, my primary care physician suggested that I might be hypermobile, and sent me to a specialized physical therapist. The only reason she knew about hypermobility, was that she herself suffers from hypermobility syndrome, and has first-hand knowledge of just how painful it can be. The physical therapist confirmed that I was hypermobile after having me do a series of maneuvers, a test that lasted less than five minutes. She determined that my SI hip joint was lax, and moved in and out of socket as I walked, causing one leg to be shorter then the other, throwing my entire back out of alignment. We began a series of special, stabilizing exercises, and I finally, slowly I began to gain relief. By March 28^th, just one month after my lowest point and darkest hour, I was flying up to Washington, DC to interview for an internship. Granted, I was not skipping, or carrying my bags, or completely pain-free, but I did it. It was not fun, it was not easy, but I succeeded. This normalcy would have been unfathomable a month ago, yet here I was, my life was finally starting to come back.

Despite all this trauma, suffering, and physical as well as emotional torture, I feel lucky. I am so blessed. Less than 10% of people suffering from Hypermobility Syndrome are diagnosed by their primary care physicians. The vast majority never receive a proper diagnosis, and even if they do, it is often too late – they have ruined their lives with alcohol, drugs, and depression. And I don’t blame them, there is no choice; when your options are pain or numbness, and the pain is completely engulfing, you must choose numbness because the pain is too impossible a burden. I feel so grateful and lucky that I finally found a physician who said, ‘yes, I can help you.” I am grateful that I had a supportive family who believed in me and fought with me, even when everyone told us to surrender. And I am so lucky that I had the resources to see so many doctors and receive so many treatments. I was a ghost, I was in Hell. And if it weren’t for my family, I would still be there.

The medical community has been biased against Hypermobility Syndrome (HMS) since its first appearance in medical journals in the late sixties. It was deemed “benign joint hypermobility,” since patients appear to be healthy apart from the increased range of motion in their joints. Despite being linked to serious conditions such as fibomyalgia, osteoarthritis, and pregnancy complications, the stigma of benignity has endured. The answer may lie in the fact that HMS occurs in women 5.5 times more than it does in men, and that when females complain of otherwise inexplicable pain, doctors simply view them as weak and unable to handle pain that would not bother a man. In a New Zealand study of 59 men and 43 women presenting with back pain, not one male was found to be hypermobile, and the causes of their pain were straight-forward orthopedic conditions such as slipped disks or spondylolysis. Of the women, only half were diagnosed with similar conditions, and the majority of the remainder were found to be hypermobile. Studies such as this not only suggest that hypermobility is more serious and common than most doctors believe, but also demonstrate that when patients present with symptoms of sever joint pain, men and women should be considered differently. HMS is a major women’s health issue, yet most doctors know little about it, and it is time that changed.

One of the most frustrating parts of this experience has been the lack of information. As a patient, I had to fight for myself, I had to research and dig to find information that my doctors were not giving me. If I had listened to them, my life would be over. But I fought, and though it has proven worthwhile, it has been a lonely road. There are no support groups, no open dialogues about the disorder, which means I have no guidelines to help me figure out how to live my life. I have learned that as a hypermobile person, I have to do things differently; I have to plan and anticipate each move, and there are some motions I can no longer do, and I have to figure out on my own how to get around that obstacle and do it my way. I have no idea what I can expect from my future – there is no one to look up to or talk to in order to help me figure out how my HMS will affect my work and my family life. Do I tell my boss about HMS, would he even understand, or do I keep it a secret and hope that he does not find my inability to sit still for more then 10 minutes or my short attention span on painful days detract from my job performance? Should I have kids if I have a 50% chance of passing HMS onto them, and even if I adopt, how will I care for my children on those days I am in so much pain I cannot even take care of myself? I have no idea how to begin to answer these questions, and that is frightening, the solitude is crippling.

Another hard thing to swallow is that there is no “getting back to normal” for me. This experience has changed me irrevocably. I have to accept that some things I used to do, and loved to do, are things that will forever be off limits for me. I can’t go for a run, I can’t play soccer or field hockey, and I can’t do cartwheels through the quad just because I feel like it. I can’t give my nieces piggyback rides, I can’t play in the Marching Band, I can’t carry heavy books or sit in the library for 5 hours, and I can’t do yoga. It is hard to know who you are, and not loose parts of yourself, when these things are stripped away. Can I still be me if I can’t wrestle with my nieces, or run around being crazy with my friends? I feel at times like I am a prisoner in my body, like there is a constant struggle between how I want to be and how I can be.

Some people say that everything happens for a reason, and I used to be one of those people. I don’t believe that anymore. I cannot accept that someone did this to me in order to teach me a lesson; that would mean the universe is far crueler than I would ever want to accept. What I do believe is that every situation has the potential to become meaningful if we consciously make the choice to make it matter. And so although nothing could ever undo the horrible pain I endured, and will continue to endure, if I can make this experience meaningful by helping even just one other person to avoid a similar situation, then maybe, just maybe, it will be worth it in the end.

Love and hope,

Chelsea