Today marks the start of Ehlers-Danlos Awareness Month. I thought I would share with you a blog that I wrote for the Huffington Post in 2013 to raise awareness and understanding of the condition. This was back in the day when I only had one diagnosed problem. Good times!
Hands up if you’ve heard of Ehlers-Danlos Syndrome? Chances are if you actually have EDS, you’d be a bit wary of thrusting your arm up in the air for fear of shoulder dislocation. Trust me, I’ve learnt the hard way.
Like many conditions, the Wikipedia definition doesn’t come close to help explain the day-to-day realities of life with EDS.
Ehlers-Danlos Syndrome is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. EDS can manifest in a number of ways, for me, it mainly manifests in frequent dislocations and subluxations (now up to about seven or eight a day) and chronic, debilitating pain.
If I’m honest, I just about managed to drag myself through gap yahs in Paris, my undergraduate degree, half of a Master’s degree (which I have had to put on hold because of the pain) and a number of internships and jobs. I’m now at a point where this isn’t possible. My condition now affects every joint in my body, including my jaw (the most recent, and delightful, addition).
I have the support of my parents, friends, teachers and mentors who are all able to take my condition into consideration (something that I hate, but have to accept), which allows me to live as normal a life as possible. I have started a successful website, am starting a new business (thank goodness for the internet – seriously!). But I am extremely lucky. I have had to leave a number of jobs and internships because I have not been well enough to go to work. I am unable to have a regular nine-five job. I am unable to travel on the tube to work, I am unable to sit through lectures. I can barely get to my own office, which is five minutes away from my house, and sit there for an extended period of time. Without the financial support of my parents, I would be broke, unemployed and homeless (jeeze – that’s depressing!). There needs to be support given to those who wish they could work, but simply can’t. I am lucky that I have a business partner that fully understands, and works very closely with me so that I can work within my limits, even at times when they’re significantly reduced, and it means more work for everyone else.
EDS is a condition that is little understood by the medical community. Despite having symptoms since I was 11, I was not diagnosed until I was 21, and was on my seventh (and very astute) physiotherapist, who only knew about the condition after having been on a training course. My GP, my dentist, my other physiotherapists had never heard of the condition.
Jacqueline Marshall in the Washington Times wrote: “People with chronic physical illnesses not only face the symptoms of their disease daily, but also must manage the mental and emotional ramifications of having perpetual symptoms.”
A recent blog I read described this struggle:
“When you live with a rare disease, it is easy feel like you are utterly alone in a very small boat adrift on a very big ocean. It is an overwhelming, terrifying feeling.
EDS is considered a rare disease…and it is incredibly discouraging when no one has ever heard of it, when you have to spell it for your doctor and watch him Google it to find out how to treat you, when no one you know has it, and you are forever the weird one. It makes for a very challenging, lonely journey.”
There needs to be more research and training given to GPs, physiotherapists and other medical practitioners, in order for EDS patients to feel more understood and receive adequate treatment. This lack of understanding, mixed with chronic pain can also lead to severe depression. Something, which in itself, is still significantly misunderstood in the UK.
Becoming aware is the first step. You may have family members, friends, patients, with invisible illnesses that receive little public attention and finance. This is the best list of how you can support people with EDS that I have found on the internet:
Five Considerations for Supporting People with EDS
One. People with EDS may seem preoccupied or withdrawn even when they appear to be healthy. The introspection might result from fearful anticipation about what the future holds, from managing pain, or having to be careful about all their movements. They may be exhausted and recovering from exertion.
Two. As do most of us when our activity is limited, people with EDS experience anger. Since EDS is not curable, the anger is something they must learn to manage. The least the rest of us can do is avoid annoying them further by refraining from telling them what they need or how they might cure themselves.
Those who live daily with EDS symptoms know what they need and what to avoid. For example, getting out of the house and sitting in a park might seem like a great idea to you, but the effort can exacerbate EDS symptoms and bring your friend to a point of exhaustion. When having a bad day they will know enough to stay home.
Three. Nonetheless, those with EDS like being invited to go out with their friends. Even if they are not up to accepting the invitation it is important to feel included. If an activity is one they cannot participate in having an option of going along to watch will be appreciated.
Four. People with EDS can look healthy even when fatigued or in pain, and their stamina changes from one minute to the next. Activities enjoyed last week can be impossible this week, and sometimes they must cancel plans at the last minute.
Five. No one likes being told how they should feel, or that someone else knows how they feel. That is annoying no matter what your health status, but extra grating when you are ill and hear it frequently. Support and understanding are what is welcome.
So, to all my friends and family, I know I can be a pain in the arse (literally) at times, but I want to thank you for your love and support as I find a way to try and live the life I wish I could. I hope that this blog serves to help people gain more of an understanding about EDS, and raises awareness of this little understood condition.