Diagnosis pro’s and con’s

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 🙂

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8 thoughts on “Diagnosis pro’s and con’s

  1. Hola. Yo tambien padezco este sindrome. Como bien dice este articulo mi mayor dificultad ha sido la Aceptacion. Y esto es porque antes de que los sintomas se agravaran yo fui un gran deportista. Yo sentia que fisicamente tenia mis limitaciones, por eso me esforzaba mas que nadie para estar a la altura, lo que hizo de mi una personalidad y mentalidad 100% competitiva.
    Tengo 32 años ahora y hace 4 años que apenas puedo levantarme de la cama. Ya no tengo fuerzas para mantener el equilibrio.
    Cuando le comento mi sindrome a un amigo muchos responden: y ya esta? Te rindes? No vas a operarte? Ellos no entienden. Confunden la aceptacion con la rendicion. Yo no me rindo. He caido un millon de veces pero nunca me rendiré. Ahora ya no compito por ser mas fuerte que otro. Ahora compito unicamente conmigo. Yo soy mi mayor rival. Tal vez no pueda correr, ni saltar, ni siquiera pasear. Pero para ponerme de pie tengo que sacar mi mente competitiva. Estoy en otra liga. En la de la supervivencia. Pero voy a ser el mas competitivo en mi situacion. Voy a hacerlo lo mejor que puedo. Voy a ser el paciente mas luchador. Y se que caeré mil veces. Se que lloraré otras. Pero esto es la vida. Siempre dar lo mejor de uno mismo.

    1. Thats a great attitude. I’m sorry you’ve had such a rough run healthwise. I was an athlete when I was younger too. I still am now but I (like you) compete against myself. It’s actually a much harder competition!

  2. I was diagnosed with EDS Hypermobility type this August and am currently on the emotional rollercoaster. I, like you, was a firm no.1. Relief! A name! Then…uh oh. Genetic. My family… Thank goodness for support networks online.
    Extra Steampunk Spoons for you x

    1. Thanks so much! Extra spoons for you too! I don’t have kids (not sure ever will) but my mum was diagnosed after me and recently my Grandmother was told she’s hypermobile so we did some genetic backtracking! x

  3. Getting my diagnosis was definitely in the first category. After years of dx’s that didn’t quite match and left out things, doctors telling me that this or that ‘couldn’t be happening because it didn’t match their idea of what was wrong, and that I had several separate, unrelated illnesses & issues (that for some reason nobody thought would affect each other), I had a reason, everything I was going through made sense. It was such a relief.
    I’ve been able since then to face down everyone from the dentist to my annual ‘female’ appointments with a term & and explanation for my needs – and my pain specialist has been known to ask ME what works & doesn’t!

  4. I am in the U.S. and sadly HMS/EDS awareness seems to be even less than in the U.K. Recently I had nerve conduction studies and the neurologist suggested I may have a form of HMS because my pain seems to be focused in joints and unrelated to nerves…so far no luck on finalizing that diagnosis. You say you got a quick diagnosis, may I ask was that from a rheumatologist? After almost 9 years of Thoracic Outlet Syndrome pain (I had the bloodclot and surgery etc.) I am feeling crisis to be told that my pain is actually not entirely explainable due to TOS…an answer would be a great relief to me as I feel completely adrift now.

    1. I was diagnosed by rheumatology yes. A physiotherapist noticed how Hypermobile I was and suggest I get a referral and do some research. It does sound like you could benefit from seeing one. Have you read up on hypermobility? Have a look on http://www.hypermobility.org. 🙂 if you have any specific questions just give me a shout x

  5. Thank you so much for taking the time to comment 🙂 I’m really glad I could help you! As for the knee braces I actually find wearing one harder than none because I feel wonky! But that’s just me I’m odd even for a bendie haha! They are great braces tho, the prevent hyperextension without being closed in and sweaty and without compressing everything either 😀 ask your GP to refer you to an Orthotist who can help see if you’d benefit 🙂 best of luck with your journey and let me know how you get on! Xx

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