Grieving Through Ehlers-Danlos Syndrome

The grief cycle, as in following the death of a loved one, is something that we are probably all familiar with.  The same thing happens when we are hit with a diagnosis that changes our lives, and my life changed drastically when the chronic illness diagnoses started rolling in and in the years previously when no one knew what was wrong.

Before The Diagnosis


As a teenager, I was a dancer: ballet, tap, modern, and Irish dancing. I played netball and hockey, loved trampolining, and either cycled or walked two miles to and from school every day.  On the surface, I appeared fit and healthy.

Yet I was constantly being labeled as clumsy due to a catalogue of weird injuries resulting in the constant annoyance of the school matron and many trips to either the minor injuries clinic or the emergency department.  During secondary school, I was displaying even more strange symptoms.

By the time I reached my GCSE years, I was fighting kidney, throat, and ear infections more often than I wasn’t.  I had periods of extended, unexplained dizziness and my joints (in particular my fingers and right knee) frequently started to have a mind of their own.

Things went even further downhill when I was in 6th form that I have a gap in my memory.  I have actually “lost” about six months of my life.

During that period of time, I was in so much pain and needed such a combination of medications to deal with it at age 18, while I was battling through A Levels, (despite being told to take a year out) that I can’t remember taking my final A Level exams. Which isn’t necessarily a bad thing to be honest, but I’ve lost a lot of other memories which would have been nice to have.

Because no one was looking for Ehlers-Danlos Syndrome (EDS), I remained undiagnosed until the age of 22.

The Knowing


You would think that because of all of this, getting a diagnosis of EDS, along with the added bonus of fibromyalgia at the age of 22, it would have been a relief. It was. Sort of.

I finally had reasons as to why I felt so rubbish at times.  And I wasn’t imagining my joints popping in and out,  it was actually happening.  I wasn’t being pathetic when I was ill, I do have a weak immune system.  The pain wasn’t in my head, it was real.

But at the same time the rush of relief at being told I have a diagnosis hit me, a door was being shut and locked on my past life. You see, I was being told I have life-long illnesses which are probably going to get worse.  Which brings us back to grief.

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.  I needed to grieve.

I struggled to get my head around that concept initially.  I wasn’t dead and I wasn’t dying.  However, I wasn’t going to get better either.

I was no longer “ME”.


denial sign

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.  At this point, the latter is becoming more rare.

Still, sometimes, I can’t make sense of what is happening.

There are times I am numb to all my feelings surrounding chronic illness and I like to think that 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.  I know this denial isn’t always healthy, but I see it as a basic survival method.  And it is a component of grieving.

At times, I have pretended that I’m not ill and if I’m honest, that doesn’t tend to end very well.  I still struggle with the fact that I am not the same as my friends.  Because of my denial, I can be reckless, not pay attention to my body, and overdo it, which results in me ending up in bed needing to recover.


words anger

I try not to go down the “why me?” route.  It’s a dark hole. But being the only person in my family with EDS, it’s still hard to get my head around why exactly it did happen to me.  And I’m not an angry person.  It takes a lot for me to feel anger about a situation.  I don’t really like the sensation of being angry.  But EDS has changed that too. There are times now when I could happily go on a rampage, screaming and swearing about how unjust everything is.

And a sure-fire way of triggering my anger is making uneducated and insulting comments about chronic illness around me.

Do you think that 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 when we are sick.

We also live in a society that fears anger, but I see anger as strength.  It can be an anchor, giving temporary structure to the nothingness of loss or overwhelming change.  Such as the change EDS brought to my life.  This is something that can’t ever be answered.  The “Why me?” thought process is totally natural.



While I was going through all my undiagnosed symptomology, I found myself bargaining, mainly with myself, as a way of preventing a possible earth-shattering diagnosis.  I was in a very conflicted place; both wanting a diagnosis and fearing it.  I decided that if I looked after my body better, I could stop myself from being unwell.

So I would swim every day, eat clean, take all the supplements recommended, and actually listen to what my body was telling me.  I wanted to go back in time and not dance as much or do the sports which put unnecessary strain on my body.

But finding fault in my own actions and choices as such were not the reasons that I developed EDS.  I can thank gene mutation for that.  Maybe my joints won’t suffer quite as much as I get older if I didn’t do the things I did as a child,  but I enjoyed dance so I really try not to view it as something that I regret.



At some point, I realized I was having periods of depression.  The depression stage of grieving feels as though it will last forever.  At the moment, I think this is the stage that I keep revisiting.

It’s important to understand that having depression around a diagnosis is not the same as the depression of mental illness, though there is no shame in either and neither should be taken lightly.

The depression we feel after a diagnosis is an appropriate response to a great loss or change.  At times, I’ve found myself withdrawing from life or left in a pit of intense sadness.  Chronic illness can feel like a life sentence.  The daily uncertainty is scary.  I can’t predict how my body is going to feel or how much pain I might be in from one day to the next.

I’m not a flake but it sure seems that way.  I will make plans.  But then I’ll need to cancel plans because I’m too unwell.  But, due to the fact that I don’t ever look ‘sick’, it tests every person you know.  It takes a very understanding family or group of friends to pull you through the depression.



The final stage of grieving is acceptance.  Acceptance is often confused with the notion of being “fine” or “okay” with what has happened, or with whatever caused the grief in the first place.  This is not the case.  I don’t think that I’ll ever feel fully okay about my diagnoses.  And I definitely don’t like my new reality.  But I’m learning to accept it.  I’m learning how to make living with it easier.

Having friends who are going through something similar helps so much.  They understand on a level that no one else does, or ever can.  Along with this, I have learned that not everyone will get it.  And that that’s more of a reflection on them than it is on me.

Now, whenever possible, instead of denying my feelings, I listen to my needs and I adapt my lifestyle.  I continue to be able to live. Just with a different set of goals and dreams.  Yes, I am not the healthy person that I was ten years old.  But slowly, I am adapting to that.

About the Author:

Laura was diagnosed in April 2015 with Ehlers-Danlos Syndrome and fibromyalgia; since then reactive arthritis has been added to the list. She also has various mental illnesses for which she is about raising awareness and reducing some of the stigma held over mental and chronic illnesses.  Laura is using this opportunity to talk about about being a spoonie. She blogs about what life is like as a professional sick kid at Confessions of a Zebra.

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