The day I got the diagnosis I was washing the car in preparation for my trip to Scotland to marry my fiancé Chris. It was a sunny day, and I had music playing on my phone. Mid wash the music stopped, I went over and checked my phone to see a withheld number was calling me. When I answered I instantly recognised the voice of my genetics doctor. He asked how I was, we exchanged polite small talk, and he went on to explain he had my results.
I had been waiting for weeks to find out, experiencing all kinds of feelings from frustration, fear, anger, denial, and hope. ‘I’m very sorry to tell you that your results have come back positive for vascular ehlers danlos.’ It may sound cliché, but my heart skipped a beat. I sat down on the step just inside our porch and watched the soapy water trails run down the street as I agreed to further appointments and a surveillance plan. I can’t really remember the rest of the conversation; a shocked numb feeling had taken over me.
The phone call ended, and I paused for a minute or two before I called for Chris to share the results with him. We sat cuddling on the porch step in silence for a little while after, mulling over the shock and devastation that had so easily invaded our happy bubble. Our wedding was only 2 days away; we had so much left to do. We had a beautiful day despite the news. It truly was the happiest day of my life. As we stood in Gretna Green and said our vows, a large lump formed in my throat at ‘in sickness and in health.’
"In September 2018 it will be 4 years since that phone call
Squashing the feeling down, we celebrated and enjoyed the company of close family and friends the rest of the day, refusing to let the news tarnish our day. In September 2018 it will be 4 years since that phone call. There have been tough decisions, and changes in our lives since.
We have navigated a rocky road together, sometimes taking a separate route through anger and blindness in dealing with this condition, but always finding our way back to each other. Vascular EDS does not only cause physical problems, there is so much emotional pain that comes with it for many different reasons.
Despite the many challenges and issues this condition presents, I have gained a deeper appreciation for my husband, and everyone that has supported me and stood by my side during the storms. My advice for anyone dealing with vascular EDS, or newly diagnosed, is to let people try and help you. Hug your loved ones tighter and keep them close. Don’t feel bad for the days you can’t cope, or if you are feeling overwhelmed.
Maintain hope that one day a cure will be found, whether it is in your lifetime or another. Lastly, when you are feeling alone and invisible, you are not.