Since 2013, I have been navigating a disease called Ehlers-Danlos Syndrome. I post on issues pertinent to the psychology of living with a chronic illness. I also give the run-down on articles and information I have found helpful and supportive in dealing with chronic pain, finding knowledgeable doctors, and coping with living with an “invisible illness.” Many people with EDS ‘look healthy.’ It is a blessing, but it also makes those who deal with it feel alone and dismissed.
I was diagnosed with Ehlers-Danlos Syndrome – Hypermobility type (or EDS, Type 3) at the beginning of 2013 by a geneticist at Wake Forest Baptist Hospital. EDS is a heritable genetic disease meaning you inherit the condition from one or both of your parents. There are many types of EDS, some more severe than others in terms of quality of life and lifespan. The condition is cut from the same cloth as Marfans and Osteogenesis Imperfecta (aka brittle bone disease) which some people have seen portrayed in the movies or heard of in the news.
The word ‘syndrome’ in Ehlers-Danlos Syndrome is of importance. The disease most predominantly effects the joints causing severe hypermobility (appearing very flexible) in those effected with Type 3. The joints are prone to easy subluxation and dislocations, and they do tend to wear out earlier in life. There are secondary complications as well. They can be read about on EDNF’s webpage..
Additionally, muscles take over the job of ligaments and become spasmed and tight. People with Ehlers-Danlos Syndrome if diagnosed young tend to be a bit ‘floppy,’ but as we get older there is a stiffening throughout the body from the effects of years of muscles tightening to protect the loose joints. The chronic muscle spasm and recurring joint subluxations and joint wear cause varying degrees of chronic pain. So, in me, it is a balancing act to stretch out larger muscles in spasm around the larger joints and to protect smaller joints like my fingers and wrists, which remained very hypermobile.
A brief story about the experiences we have before diagnosis… In my mid-twenties, I was at my doctor’s office in North Carolina for moderate pain in my left hip and SI joint. My doctor looked at my legs and noted one was almost an inch longer than the other when I was laying flat. He did an x-ray of my hips and asked me to schedule to come back. A week later, I had gone for a long walk the previous day. My hips were feeling a little better. My left leg wasn’t swinging as much, as if I had to lift it up more deliberately. My doctor was checking my legs again when he suddenly looked up at me with a perplexed expression.
“Your legs are the same length today. Huh,” he said looking down at the floor and then up at me as if waiting for me to tell him something. I didn’t have anything I could say though, so I talked about my walk the day before and less pain this particular day. I stared at the white walls and squirmed at his white coat and quiet face, and he laughed a little at something he must have been thinking about before patting me on the back.
Like many before me, especially young women, especially young women that have been shown to down the years have conditions like MS and Scleroderma, serious conditions that manifest early but nonspecifically, I left the office with a note in my chart saying ‘conversion disorder.’ I must have, in my womanly hysteria, physically lengthened my leg with the power of my mind. I sat frustrated in my car in tears wondering if something was wrong with me before deciding I would never seek help again. On the other hand, I could consider becoming a monk with that type of psychic ability to lengthen muscle and bone.
I do believe the human mind can make you feel physically ill, but that is an investigation that should be undertaken just as physical symptoms should be. However, most often neither was the case in my situation nor in too many other stories.
My reaction in the car to never seek help again was over-the-top and it did not last, but I was fatigued from an illness I didn’t understand and from pushing myself too hard at work and in life. Being repeatedly exposed to situations where you’re made to feel ‘silly’ or ‘mentally unstable’ for explaining symptoms that cannot be seen or found on a lab test is a special type of mistreatment in my opinion.
Referencing the bizarre longer leg above, I’m now over six years later being treated for SI joint dysfunction. It took that long. I have over the years had difficulty walking with no answer as to why. Sometimes the muscles around my joint would spasm so severely that the leg would buckle and I would fall. Both of my SI joints, like other joints in my body, move more than they should on both sides. When they are out or muscles are pulling from the irritation placed on the joint, my leg appears shorter.
This is a summary-example of the possible experience of someone with a chronic illness that is not understood, and I’m grateful for discerning and intelligent physicians I found at later points over the years. EDS is painful and can be frustrating. Going through our imperfect medical system can be traumatic when you are dealing with something many doctors have not treated. The experience above was mild compared to a few others. That is why we support one another in finding ourselves and our voices to speak up respectfully but firmly.
One of the ways I deal with the balancing act of living, coping, and surviving, and living again is through writing about it. I don’t always have the energy, but I think it’s important we share our stories. Because, I do not know where I would be without the amazing stories of hope and despair and joy that have guided me to live more authentically even with these challenges. I am grateful.
Like a lot of people with a connective tissue disease, it took me an agonizingly long time to get diagnosed. At the age of 20, I began my long journey trying to figure out what was going on inside of my body. I look healthy on the outside…I smile, I can be energetic and bubbly, and I’m pretty stubborn I’ve been told. I also take a lot of effort to look well, because I feel like the more okay I look the better I feel. And, I think it is true to a degree psychologically. It is not easy, though. I recommend The Spoon Theory at this point. Please take the time to read it if you are not familiar with it. It applies to everyone, not just people with chronic illness.
Now that you’ve read about The Spoon Theory (you did it, right?), you understand that people with chronic illness only have so many spoons to spare each day. We have to carefully decide how we’ll spend them. Where would you choose to spend your spoons? There are some beautiful illustrations of The Spoon Theory on Tumblr by Heartfilled Minds. For me, I alternate day-to-day…sometimes I want to be with people I love, sometimes I want to write or do photography or walk with my dog, for example. On days I work, I take a lot of down-time. At the end of 2016 I began the journey of trying to work again by taking a part-time job as a barista. It’s been a challenge, but a challenge is what I wanted.
Then, there are a certain amount of “required spoons” for things like “making breakfast,” “taking a shower,” “required physical therapy…” you get the idea. If not…did you not read The Spoon Theory? 😉 It’s such a great metaphor.
Over time, my aim on the blog is to explore the process of acceptance of chronic illness through un-edited reflection and introspection. The main goal for this site is to act as additional support to others living with chronic illness. Please feel confident in opening up and discussing how I can make this a helpful website for you as it evolves. Feel free to contribute your knowledge. I am learning.
A little about me, I went to the University of Florida where I received a B.S. in Psychology minoring in East Asian Languages and Literature. I worked for some years as a mental health case manager, and my dream is to get my PhD in Psychology. Maybe to publish my poems and to travel, but, I am open to anything. I live in Seattle, WA and have been shaped by Buddhist teachings and the love of my father who I lost in 2008 to esophageal cancer. He is an ongoing source of strength for me, and he was simultaneously religious and an avid philosopher. I enjoy hiking in the mountains (very carefully), sitting with feet buried in the sand by the ocean, and reading and talking to interesting people. I have two children (Ember the Shepherd and Apache the Lab) and am married to Daniel who I have been with ten years now. We all need support in our life whether from family or the friends that become family.
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