May is Ehler’s Danlos Syndrome awareness month, so it seems only fitting that I write something about living with EDS.
EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones. However, EDS doesn’t just affect joints and connective tissues, I don’t think there is a part of my body which hasn’t felt the impact of EDS.
- I don’t have any 3D vision
- My blood doesn’t clot at a “normal rate” – when I was younger I honestly thought that my life was going to end when I lost a tooth because of the amount of bleeding there was.
- I scar very easy
- My skin is super stretchy
- I am immunocompromised. If there is an illness going round, I’m prepared to put money on the fact that I will get it. Gone are the days when I had a simple cold; I now have to contend with the possibility of being hospitalised for something as basic as tonsillitis.
- I bruise easily. Most of the time, I don’t even know what I did to cause bruises.
- I have gastrointestinal problems, specifically gastroparesis. This means that my stomach sucks at digesting food and it works reeeeally slowly, often meaning my stomach swells up to such an extent that I look very pregnant.
- I get tired quickly. It’s no exaggeration when I say that I could easily sleep for 24 hours and still be tired when I wake up.
- My pulse is irregular and can go from 60bpm to 190bpm for no reason. Pretty scary when it happens the first few times.
As I have said numerous times in other blog posts, I try to live a normal life, with a few adaptations here and there. On the whole, May was a pretty good month for me. There were some low points, such as finding out that I need major surgery on my shoulder and then having it brought forward due to joint instability and my body image plummeting due to stomach swelling, but rewind to February when I was seriously ill with tonsillitis, which then spread to my joints, and May looks pretty good.
My May in numbers looks a bit like this:
- Four migraines
- One and a half days at work missed due to illness
- Six hospital appointments
- One steroid injection
- Two weekends away (this is a massive deal for me!)
- One blood test
- Three GP appointments
- Five dislocations (that come to mind)
I was only diagnosed with EDS last year. My joints have always been flexible and as a child, I could get into positions which most people deemed as weird or like something from the circus. When I was a teenager, I was in and out of A&E which injuries, most of which I acquired at school. My mum used to home and say that it was just as well the injuries always happened at school, otherwise social services would have been all over us. Hospital just flagged me as a clumsy child, despite my mum and I raising concerns at the frequency or injuries as well as how easily I seemed to get hurt. Prior to diagnosis, I had two major hip operations but still no one seems at all concerned at what my body was doing. During a pre-op, it was discovered that my bloody was “runny” and wasn’t clotting but despite being referred to and seen by one of the top haematologists in Oxford, no one could provide an answer as to why. Post surgery, I was rushed to critical care because my pulse was so low and my blood pressure kept crashing. Part of EDS means that it isn’t just one thing at a time that is wrong; during medical appointments I have to prioritise what is worse and that could be a long standing issue such as bad hips, knees or shoulder or it could be a newer problem, like bad wrists. Unless I know the medical professional who is treating me well, I am often scared about opening up about the realness of my situation in case they think I’m a hypochondriac or just making a fuss. Unfortunately, EDS isn’t a well known condition and it isn’t expected for a 23 year old woman to have such a long list of problems. Asking “have you heard of EDS?” and then explaining it to a medical professional automatically gets their backs up, in my experience that is often down to arrogance because doctors don’t like to be educated by a mere patient. Obviously not all doctors are like that, but I’m yet to meet one who is willing to be educated and will listen to what I am saying about my body. I did an English degree but I don’t proclaim to know everything about English language, it’s the same for medical professionals I guess. The simple fact is, I know my body a lot better than anyone else does!
It was down to my fantastic physiotherapist that investigative tests were carried about to see if there was another reason behind my body’s idiosyncrasies, besides me just being clumsy. Receiving the diagnosis was a bit of an anti-climax. I remember being told that yes, I do have EDS, hypermobility type, then told there wasn’t a cure and then being shown the door.
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
Naively, I had hoped that having the official diagnosis would open doors to new treatments or everyone suddenly understanding, but it wasn’t like that. My physio and GP still oversee all of my treatment and I am under various consultants for different parts of my body. I dream of a day whereby I have a consultant who oversees everything, but as there are only two places in the country which specialise in EDS, I feel that is very unlikely.
But, I am happy. Things might not be prefect, but I don’t think anyone can ever say that things are. Things are, at times, incredibly challenging and of course there are times when I wish that I didn’t have EDS. Whilst the official diagnosis may not have opened doors to new treatments, it did allow me to meet new people, it allows me to have a voice and speak up for other people and it gives me the determination to raise awareness in the hope that one day there will be better treatments and maybe a cure.
I am Laura. And I am a zebra.