What comes after the relief of a diagnosis?

My sister text me the other day to say this week’s Grey’s Anatomy had featured an EDS case. Anyone with a rare condition will tell you it is both exciting and nerve racking when your condition is featured on a main stream show. How are they going to portray is? Are they going to get it right? Are they going to do more harm than good by featuring this? So with slight trepidation I watched the show. I don’t usually watch Greys, so I only watched it for the EDS story line and they actually did a good job. The utter shock on the doctors faces when the girls shoulder almost spontaneously dislocates actually made me laugh. Like many others with EDS my shoulders come out several times a night when I sleep.

The bit that really got me thinking was the relief that was portrayed when the doctors gave her a diagnosis of EDS, the tears, the ‘so it’s not all in my head – moment’, the relief of finally having a diagnosis after so many years of being fobbed off but knowing that you are not well. But what happens after that initial relief, after the elation of having a diagnosis. This diagnosis, like many other rare condition diagnoses isn’t like other diagnoses. Normally, you go to the doctors, you get a diagnosis and a diagnosis means a treatment plan and you follow that plan and you get better. However, that’s not the way EDS works, once the initial relief of a diagnosis has gone away you are left with the realisation that all you are left with is a name, something to call it. There is no treatment plan, there is no getting better, if anything you are left with a string of appointments where further problems are diagnosed that also have no treatment plan.

So, after all the scans, the tests, the various consultant and physio appointments, you find you are left in a state of mourning, of almost grief. The realisation that there is only one way this condition goes and it’s not going to get better. So, all the plans you had with your life are either gone completely or massively revised because your body can’t cope. It is ok to feel angry or to be upset that this has been taken away from you but it is also important to move past that stage. For me I am just starting to come out of that stage but I am still working on acceptance. It is hard to know that you have to put yourself through painful surgeries just to try and preserve a situation, to stop things becoming really bad in the future, its difficult to go in to complex and possibly life threatening surgery knowing that it will not make an immediate impact on your life, it will not stop the pain and it will not make you better. It can be really difficult to explain this to people who assume that because you are undergoing surgery it will ‘fix’ you.

So what comes after the relief of a diagnosis? Well a period of grieving and like with the stages of grief eventually comes acceptance, it may not be the life you had planned or chose but you can begin to move on with your new life.

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