I’ve heard a lot of chat about how people feel when they receive a diagnosis, so I’ve decided to share my ramblings on the topic. There tend to be 3 distinct trains of thought upon receiving a diagnosis.
1. I’ve got a diagnosis this is good.
2. I’ve got a diagnosis this is bad.
3. I’ve got a diagnosis I’m not sure how to feel.
I was a firm number 1. after years of struggling with pain, joint problems, fatigue and tummy trouble and more I finally had a uniting name for all the stuff that was wrong with me, a name that served a few purposes.
A diagnosis for me was instant relief, what I was experiencing was REAL. I was JUSTIFIED in feeling the way I did. My pain, fatigue, joint problems and endless list of injuries was not my fault, it wasn’t in my head, I wasn’t lazy or a wimp.
I have Hypermobile Ehlers Danlos Syndrome.
I could now look forward to treatment options, plans for the future, and spend ages researching the best ways to live with all the stuff that made my life difficult. How do you google something when you don’t have a name for it? As soon as I did have a name for it I googled it, I found www.hypermobility.org and I started learning to put my life back together.
The 2nd category is people who feel the opposite to me, a diagnosis means something is wrong, something about you isn’t ‘right’ or ‘normal’ and with a chronic condition you have to learn to accept that your life is always going to be a bit different, not necessarily bad but bits of it are probably going to be really hard.
For some people a diagnosis marks the end of hope for a ‘normal’ life. The next stage is usually the same (google) but what if you don’t like the answers you find on the internet, what if its all down hill?
This is a perfectly natural way to feel, but let me explain why I fall into the 1st category.
Before my appointment I was suffering with the following:
Chronic and acute pain, chronic fatigue, joint subluxations, repeated injuries, clumsiness, trouble standing, headaches, tummy trouble, poor balance, low mood, back problems, falls, easy bruising, brain fog and more.
I had no idea what to do with my self, how to cope and I had nobody to talk to who really understood.
20mins later I left an appointment with a diagnosis. I was still suffering with Chronic and acute pain, chronic fatigue, joint subluxations, repeated injuries, clumsiness, trouble standing, headaches, tummy trouble, poor balance, low mood, back problems, falls, easy bruising, brain fog and more.
BUT I had a name for it, I had a plan and I had a promise of better pain meds!
The diagnosis didn’t change any of the things that were wrong with me and it didn’t suddenly make me ‘sick’ or ‘disabled’ I felt the same, the reason I got the diagnosis was because I already had all the elements of the illness and I was surviving. I would keep surviving.
I read a lot during the months following my diagnosis, I researched and I talked to others and I heard a lot of scary things, would I have to give up work? would I end up in a wheelchair? what if I got some of the complications I’d read about…
So what! if that was my future then diagnosis or not thats what I would have to live with, but now I’m prepared for it. There was a time where the thought of being in a wheelchair would have scared me silly. But after a lot of research and chatting to a lot of people I learnt that a wheelchair is a pacing tool, a chance to get out of the house whether you could walk or not! what would you rather, staying home or going out on wheels? or going shopping while in horrible pain Vs sitting down shopping while feeling good?
Gradually after chatting to a lot of people at various stages of their journey I learnt that I’d much rather be prepared to face my worst case scenario then ignore it all and pretend I’m still ‘normal’.
Whatever will be, will be.
The 3rd option is generally a mix of the 1st two. This is probably the most normal of all. The stages of grief don’t just apply to the loss of a loved one, you can grieve for the loss of your health, the loss of a job, the loss of hope. Usually the end is the same. Acceptance.
You are still YOU. Nothing can change that but who and what YOU are will change and adapt your whole life. Some people adapt quicker than others but theres no problem with that.
The one warning I would give is don’t become your condition, I spent years researching Ehlers Danlos Syndrome and all its associated conditions and variations, I still do keep up to date with the latest papers, I’m active in the local and online communities and I volunteer for the HMSA but I do have a life outside my chronic illnesses, a happy, complicated, bizarre, silly, sparkly life.
Ciao for now folks, let me know what you think 🙂