Grieving the Life I Had Before My Ehlers-Danlos Syndrome Diagnosis

The grief cycle following the death of a loved one is something we are probably all familiar with. My life changed drastically in the years running up to diagnosis, and when the chronic illness diagnoses started rolling in. As a teenager, I was dancing (ballet and Irish dancing), playing netball and hockey, trampolining and either cycling or walking two miles to and from school every day. On the surface, I appeared fit and healthy, but was constantly being labeled as clumsy, thanks to a catalogue of weird injuries, resulting in me annoying the school matron and many, many trips to minor injuries and the emergency department.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

As I progressed through secondary school, I was displaying more and more symptoms of Ehlers-Danlos syndrome, but because no one was looking for it, I remained undiagnosed until the age of 22.

By the time I reached my GCSE years, I was fighting kidney, throat and ear infections more often than I wasn’t fighting them, I had periods of extended and unexplained dizziness and my joints (in particular my fingers and right knee) started to do their own things, with frequent dislocations and constant pain. Things went downhill further when I was in sixth form. I genuinely “lost” about six months of my life, at the age of 18, because of all the pain I was in, the combination of all the medication I was on and the fact that I was battling through A Levels, despite being told to take a year out. I can’t remember taking my final A Level exams, which isn’t a bad thing to be honest, but I’ve lost other memories which would have been nice to have.

So because of all of this, getting a diagnosis of EDS and fibromyalgia at the age of 22 should have been a relief. In part it was, I finally had reasons as to why I felt so rubbish at times. I wasn’t imagining my joints popping in and out, it was actually happening. I wasn’t being “pathetic” when I was ill, I have a weak immune system. The pain wasn’t “in my head,” it was real. But at the same time as the rush of relief, being told I have lifelong illnesses which are probably going to get worse felt like a door being shut and locked on my past life.

I hadn’t ever considered the fact that I was going through a grieving process for my healthier teenage years. It wasn’t until my physiotherapist pointed out that I was going through a big adjustment in how I lived my life and that I needed to take time to come to terms with that and grieve. I struggled to get my head around that initially – I wasn’t dead and I wasn’t dying but I wasn’t going to get better.

Personally, I haven’t found the grieving process for my old life linear. Some days I can be rational and logical about things, other days I can sit and cry and mourn, although the latter is becoming rarer.

I still struggle with the concept that I am not the same as my friends. Because of this, I can be reckless and not look after my body, which results in me ending up bed-bound to recover. Sometimes, I can’t make sense of what is happening. I try not to go down the “why me?” route, but being the only person in my family with EDS is hard to get my head around. At times, I have pretended I’m not ill and if I’m honest, that doesn’t tend to end very well. Sometimes I am numb to all feelings surrounding chronic illness – I like to think it isn’t there. There are days when this thought process makes life possible: it allows me to get from one day to the next with as little fall-out as possible. Denial isn’t always healthy, but I see it as a basic survival method.

I’m not an angry person. It takes a lot for me to feel anger about a situation, partly because I don’t like the sensation of being angry. But, there are times when I could happily go on a rampage, screaming and swearing about how unjust everything is. Again, this links to the “why me?” thought process, something that can’t ever be answered. A surefire way of anger surfacing is when someone makes uneducated and insulting comments about illness. You think I’m lucky having afternoon naps or needing to spend the day in bed? It is natural to feel deserted and abandoned – the majority of the time, we live in a society that fears anger. I believe anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss or overwhelming change.

Before being diagnosed, I found myself bargaining with myself, as a way of preventing the earth-shattering news of a label. I was in a very conflicted place, both wanting a diagnosis and fearing it. If I looked after my body better, it would stop me from being unwell: I would swim every day, eat clean, take all the supplements and actually listen to what my body was telling me. I wanted to go back in time and not dance as much or do sports which put unnecessary strain on my body. Finding fault in my actions and choices as a child and teenager were not the reasons I developed EDS, I can thank gene mutation for that. Maybe things would have been different if I didn’t do ballet or Irish dance, or tap and modern dance as a child, then possibly my joints wouldn’t suffer so much as I got older. But I enjoyed dance so I try not to view it as something I regret.

The depressive stage feels as though it will last forever and I think at the moment, this is the stage I keep revisiting. It’s important to understand that the depression around diagnosis is not necessarily a sign of mental illness. It is the appropriate response to a great loss or change and that does not make it any less valid. I’ve found myself withdrawing from life, left in a pit of intense sadness. I’m not dead or dying but a chronic illness can, at times, feel like a life sentence. The uncertainty is scary, I can’t predict from what day to the next how my body is going to feel or how much pain I might be in. It’s hard trying to make plans and then needing to cancel because I’m too unwell. I’m not a flake but sometimes it looks like that, more so because I don’t look sick, so there isn’t any obvious evidence to me feeling horrendous. It takes a very understanding family and friendship group to pull you through the depression.

Acceptance is often confused with the notion of being “fine” or “OK” with what has happened and the new diagnosis. This is not the case. I don’t think I’ll ever feel fully OK about chronic illnesses. I don’t like my new reality but I’m learning to accept it. I’m learning how to make acceptance easier: having friends who are going through similar situations helps so much. They understand on a level no one else does. I’m also learning that not everyone will get it and that’s more of a reflection on them than it is on me. When possible, instead of denying my feelings, I listen to my needs and I change and adapt my lifestyle. I am able to start living as well, with a different set of goals and dreams.

I am not the healthy person I was at 10 years old, but slowly, I am adapting to that.