Ehlers Danlos Syndrome and the long search for answers.

I have never been one to sit quietly and accept things on face value. When my daughter began to get very ill in her early teenage years with a strange sort of flu like virus that lingered for weeks at a time I searched for answers. What was this horrible virus that Veronica never quite recovered from?

I wanted to know why my 14 year old daughter had a headache that would not go away? Why she was  constantly nauseous and at one stage of her illness only able to eat plain pasta, tomatoes and apples. Why was my girl totally exhausted and yet unable to sleep? Why were all her joints aching? What caused her to nearly pass out every time she stood up too suddenly, what caused the heart palpitations and the unexplained bruises? Why did a simple cold always turn into a chest infection, why was she quick to catch everything and slow to heal? Why was my daughter in pain?

I needed to know why this was happening to my first born child and so I pushed for answers. My hopes would rise with each new specialist we saw only to be shattered again when the results of Veronica’s blood tests came back as normal, except for one little marker that was always a bit higher.

When your child is sick finding out why does become like an obsession. A sick child takes a hell of a lot of energy and it is also a very isolating experience for a mother. I couldn’t really talk about how worried I was about Veronica with my general acquaintances because that sort of conversation very quickly becomes boring. My only allies were my mother and my best friend Tanya, who has lupus.

Mum and Tanya held my hand, soothed my fears and offered their ears. They would ring me with news of  rare conditions with symptoms that sounded similar to Veronica’s and encourage me to go to the Doctor to get this and that checked out. They were there to pick me up when I was at my lowest and I didn’t feel quite so alone with their support.

At the end of two years of illness we had exhausted all our medical options. I had been told by various doctors some kindly, some brusque and some indifferent that Veronica was faking, that she had a mystery virus, that it was probably worms, growing pains, sinus, psychological issues, anorexia and the list goes on and on. One doctor was very interested in her relationship with her father and another doctor was openly disgusted that I was so stupid as to allow this slip of a girl to waste everybody’s valuable time.

We were given a diagnosis of Chronic fatigue syndrome and told to get on with out lives and that Veronica would probably grow out of it.

All through this, The Spouse tried to be supportive but he is grumpy at his best and downright horrible at his worst. The Spouse was sympathetic to Veronica’s pain, as he is in pain all the time. He was sympathetic to Veronica’s nausea, as he always feels like crap himself.  His remedy was for Veronica to stop feeling sorry for herself and to push on through. He growled at me, that I was spoiling her when I let her stay home from school when she was having a bad day and his common refrain was that Veronica had pulled the wool over my eyes in order to have a sickie.

The standard conversation that Mum and I had was that if Veronica had a broken leg, her father would wait on her hand and foot, he would build some amazing contraption to make her incapacitation easier and nothing would be too much trouble at all for his pumkin, but because Veronica had an invisible illness he wasn’t very sympathetic and the atmosphere was tense. I am sure that he thought that chronic fatigue syndrome was just another name for lazybones.

Veronica and I pieced together a family history of similar unexplained ailments on her fathers side of the family. There wasn’t anything that we could really put our fingers on apart from, The Spouse’s sister who also had been told she had chronic fatigue syndrome and his mother who had some of Veronica’s symptoms as well. It was hard with a sick child and I was never satisfied with Veronica’s diagnosis of Chronic fatigue syndrome.

In 2007 I started blogging and one of the first blogs I subscribed to was Benefit Scrounging Scum, a British writer who had a rare illness called Ehlers Danlos Syndrome. Over the course of my first year of blogging Bendy girl and I became friends and she suggested that Veronica might have Ehlers Danlos Syndrome as well. I was horrified at the thought that Veronica might have EDS as the illness looked awful and when Veronica also said that she thought that she might have EDS, I was very quick to dismiss her with a firm no, no you don’t have that at all, because quite frankly the thought of Ehlers Danlos Syndrome frightened the shit out of me.

Of course Veronica does have Ehlers Danlos Syndrome and this was confirmed by a visit to the geneticist.

When Veronica received her formal diagnosis from the geneticist, The Spouse’s initial reaction was that the EDS must have come from me as I had a recurring dislocation of my knee from 1993 -1998 and that was the end of it as far as he was concerned. If I tried to talk about the EDS coming from his side of the family I was angrily dismissed and told to stop nagging him. The Spouse did not want to hear about EDS and it took a month or so before he could begin to accept that Veronica’s EDS had possibly come from him.

All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. 

Twelve months after Veronica’s diagnosis, The Spouse and David were also diagnosed with Ehlers Danlos Syndrome.

It has been a long journey.