I wailed inside the airport...
I had to be comforted by strangers
On the 26th of April 2012, I travelled to London to meet Professor Grahame. This trip came after 18 months of struggling with the Irish health system. My pain and dislocations were ignored here, I was labelled as mentally ill. This visit to London was everything, after an hour-long consultation I was told that I had Ehlers Danlos syndrome, those words broke my heart. I was heartbroken because I had just been told I had a lifelong genetic condition, my heart also broke because I was happy, happy that I finally had an answer, finally someone believed me. These two emotions were so conflicting, how could you be happy to have something wrong? you only feel this if you have been through the Irish health system.
I came home and two weeks after I had a consultation with my rheumatologist. During this appointment I asked why he couldn’t have seen that I had EDS in the previous appointments, even though I had pointed out on numerous occasions that I was hypermobility. Through out the entire appointment the doctor was evasive and refused to even use the term Ehlers Danlos Syndrome, instead referring to it as “hypermobility syndrome”. That was the last time I ever seen a rheumatologist, as after all they had put me through for 18 months, even when I had been diagnosed by a professor and expert in EDS, they still wanted to down play my illness.
Over the years I managed my illness with my GP. Trying to avoid hospitals as much as I could. Every hospital visit was almost like a mini lecture, I had to explain over and over what was wrong, why they had to be gentle with me and not be pulling at my limbs. On one occasion I even had a Doctor tell me that it was a made-up condition and that all I needed was “a good man”. Even as my list of medical diagnoses grew, consultants still weren’t being helpful, I was pushed from pillar to post, never getting answers easily. After one particularly bad faint due to autonomic dysfunction, my father was told by the Doctor in the accident and emergency that fainting was common in young women and that I would grow out of it, I was 26 at the time.
Today I once again face having to travel to the UK for treatment, in fact just this weekend gone I was due to meet a specialist for my stomach, but due to flight delays, I missed the appointment, I now have to try and reschedule and rebook everything. All because six years on, I can’t be treated in my own country, my gastric consultant has done all he can for me, he is not a specialist in EDS, he just has an interest, but it takes years to build up that knowledge.
The Irish state needs to recognise Ehlers Danlos syndrome for the multi systematic illness that it is, it affects the entire body. They also need to provide treatment that address the issues we face. Currently there isn’t even an accurate number available for how many sufferers there are in Ireland of this condition. Official figures will state that there are 130 cases, yet there are far far more than that. This gaslighting by the health system makes us all feel like second class citizens. The way we are treated (or not) leaves suffers and their loved ones stressed and broken. Over the weekend when I learned my flight was so delayed that I would miss my appointment, I wailed inside the airport, I was alone to try and keep costs down, so I had to be comforted by strangers, who upon hearing my story, where disgusted that I couldn’t be helped in my own country.
We deserve help and compassion, to be treated by doctors who are competent in our condition and to not be forced to travel alone and scared, frightened of what we will be told by the experts but also torn because a part of us will be relieved to be believed.