On Being Believed

So this XMRV retrovirus, the possibility of having a tangible test that shows a significant physiological finding, got me thinking about what it means to be believed.

My family, my friends. my husband, my GP – they all believe I am very ill with ME/CFS and that is a physical condition.  But with nothing to point at it to say this is what it is, everything feels a bit woolly and mysterious.

I find myself from time to time with the doubts, fears and questions of what this all means.  What is it that’s exactly wrong with me and more importantly how can I get better? 

Recently I’ve read a few people with ME who say they too get those moments where they start to wonder if they are imagining it all. Can they really be this ill, for this long?

When I was 24 I became very ill with depression.  I had the beginning of what I would consider a sort of breakdown.  I was crippled by fear, confusion and a sense of hopelessness.  I was in a very low, very bad place.  I was lucky enough (and brave enough) to attend 9 counselling sessions through my employer at the time and struck gold with a counsellor who made a significant impact on my life. 

One of the simplest things she offered was that she believed me.

My GP at the time had been dismissive, saying I couldn’t be depressed and conduct myself in the sensible manner I did at his appointments.  He reluctanly prescribed ant-depressants once he knew I was getting counselling.  He was, in short, an ass and compounded many of the root causes of the depression.

But my counsellor had no doubts about the state of my mental health. Let me get to the point.

I remember saying to my counsellor, through a haze of confusion and pain, that sometimes I wondered if was really depressed or if I was just making it all up.  Pretending somehow.  Because sometimes it didn’t feel like it was really me.

She told me that of course I was going to feel that way sometimes.  Because it’s far easier to think we don’t really feel that way than to have to accept that we do.  It’s easier to live with the lie that we’re ok than to face up to the problem.

It makes sense to me.  And it translates to chronic health problems too.

By the way,  the depression is long since gone.  It took more years to pass and more support from a GP, a counsellor and a psychologist to set me free.  But with their belief in my illness, their support in it’s treatment and my own faith in myself I did beat the depression.  Back to being believed …

At around 27 years old, a year on from my recovery from depression, I had started to get fit again.  I walked a lot and I was going to the gym a couple of times a week. 

I started getting a funny pain in my left leg.  I stretched more.  I exercised more.  The pain got worse and it was there every minute of every day. 

Eventually I saw my GP about my funny leg pain that wouldn’t go away.  He told me he thought it might be a problem with my back, which seemed a bit weird to me, but he would refer to a specialist for some tests.

The pain got worse.  It started to wear me down. And the pain kept getting worse.

Before I saw the hospital I needed to move house.  I’d moved quite a few times in the proceeding years and always got stuck in.  My dad and brother came to help.  The room I lodged in was up two flights of stairs.  By the second or third trip up and downstairs carrying boxes I was feeling exhausted.

I remember my dad was pretty appalled by my apparent lack of fitness.  I needed to sort myself out. 

I didn’t know what was wrong with me but I knew something was wrong.  I’d had a driving lesson where I was in so much pain and so locked up I couldn’t change gear.  I would press the peddle and shout the gear to the instructor who would shift the lever for me.

Was I making this up?  How could a funny pain in my leg stop me from changing gear in a car or carrying boxes up and down stairs? Could it all be psychological somehow?  What the hell was wrong with me?

At the hospital they knew straight away that the funny leg pain was sciatica.  They even knew where the damage was in my spine just from where the pain was located in my leg. 

When she showed me my x-ray there was no longer any doubt.

The lower discs in my spine were (are) crushed.  The bottom disc was (is) seriously squashed.  Kind of like the width of a coin compared to the healthy discs higher up which were more like a finger width.  This was damage acquired over years and years.  It was permanent and it was irreversible.  I was 28 years old. 

The specialists assistant said “there aren’t many people your age in as much pain as you are right now”.

Suddenly the months of struggling were all real, all honest, all explained. 

I knew that in fact I had been performing well beyond what could have been expected of me.  When I think back now to the pain I was in then I would not have been going to work, let alone doing half the things I had been.  In fact I’m not sure how I managed, living alone, having to do everything for myself with that amount of pain.

When I told my parents about the diagnosis, about the lifestyle changes the phsyiotherapist had told me I must make (permanently) to save my spine, it felt like it changed everything. 

I hadn’t been making this up.  The pain had been much worse than I had let on.  The constant never ending pain had indeed been taking it’s toll.  Now I had an x-ray that showed all of this was real.

It took a long time to adapt.  But once family, friends, colleagues and even me had something concrete to know this thing was real and why it was happening, I knew that they could believe in the pain.  They could believe in why I had to say no to doing certain things and why I had to make certain changes in my lifestyle.  And I could believe in it too.  There was no doubt, no hiding, no denial.

So XMRV, ME/CFS and belief?

XMRV could be the key.  Not just the key to perhaps what causes ME/CFS, or is a contributory factor in ME/CFS.  But the key to belief in ME/CFS as physical illness.  A simple blood test to show a significant abnormality.  A simple blood test to let myself and others have no doubt.

Because being believed doesn’t just unlock treatment.  It unlocks understanding, compassion, awareness, support and certainity.

I don’t know yet if XMRV will turn out to be the key.  I can’t say the prospect of being diagnosed with a retrovirus that I cannot ever be free from and that I am in danger of infecting others with, is something I welcome with open arms.  But the proof, the piece of paper, the confidence in the diagnosis, is something I would like very much indeed.


8 Responses to “On Being Believed”

  1. 1 Richard Lucas October 14, 2009 at 12:23 pm

    A wonderful post, I recognise your predicament exactly. I too have suffered from depression, and your experience mirrors mine. My two ‘tangible’ illnesses were bowel cancer and diabetes, and I know the incontrovertible nature of these conditions made them much more “acceptable”. My ME leaves me wondering if I’m imagining it, the recent news of the retrovirus is going to be a real help.

  2. 2 Jozephine October 14, 2009 at 1:58 pm

    Awesome post, thank you.

    I have days when I don’t believe myself. I suppose that’s denial? I have had doctors who have believed me and those who haven’t.I’m sure lack of belief, of validation of our feelings makes our illness much worse. Well, of course it does.

    So why do we have to justify ourselves? It will help to be able to wave a piece of paper with test results on it, but what a shame that anybody has to have the experience of not being believed. There’s something wrong with attitudes, particularly in the medical professions.

  3. 3 Sue October 14, 2009 at 3:15 pm

    Wow, what a powerful post. You’ve really been through a lot. I was very healthy until CFS hit in 2002.

    I think you’re absolutely right about being believed and this new viral research. Just all this news coverage is a big help! I’ve heard from so many of my healthy friends in the past week, as they’ve heard the news on the radio or in the paper and called or e-mailed me to tell me about it. This publicity about real scientific evidence is in itself helping all of us.

    Thanks for sharing your story.


  4. 4 Shelli October 14, 2009 at 4:04 pm

    Brilliantly written and spot-on. You captured what I feel perfectly.

  5. 5 rachelcreative October 14, 2009 at 8:26 pm

    Thanks folks.

    Your comments mean a lot to me.

    I have a part two to write on this. Mainly because I forgot I wanted to include what happened this week to bring being believed into even more signifance for me. Hope to write that soon.

  6. 6 ashysheela October 15, 2009 at 10:40 am

    I certainly felt so different about my illness once i had been tested for and diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome, for those not in the know!).

    To have a condition that was obviously connected to my ME and to have actual test results that things were badly not right with my autonomic nervous system was a revelation…

    At last i could explain the mechanisms of a at least part of my illness. I had symptoms i could actually understand and could explain to others (like the DWP, but also extended family who just did not seem to “get it”) why i had trouble doing x and y, and why i felt so ill.

    It made life a lot easier and made it much easier on me emotionally to feel i was being taken seriously at last. Validated. No-one could deny my physical illness any more, even though i had long since accepted it myself, it is hard to stop the mind running around in circles about that stuff, it is very stressful and not good for us, obviously!

    To be able to understand the WHOLE illness would just be amazing, and so valuable in itself, cure or no cure.

  7. 7 Mina October 15, 2009 at 1:02 pm

    A very intelligently written post. This XMRV/ME link adds to other research findings that CFS/ME is a physical illness.

    In a study on CFS, Professor Puri of Hammersmith Hospital used MRI brain scanning techniques and found that patients with CFS had excessively high levels of choline in their brains. The body uses a combination of choline and fatty acids to create the brain’s phospholipids, which are crucial for communication between cells. The excess levels of choline indicated that the phospholipids were not being formed properly because the patients were deficient in long-chain fatty acids.

    Thus it would seem that there are several angles from which you could state the ME/CFS is a physical illness.

  8. 8 Headacheslayer October 20, 2009 at 4:15 pm

    I feel like you were inside my head when you wrote this. Besides CFS/FMS I have a host of other illnesses that my parents do not “believe in” including the CFS/FMS. Based on my Grandmother having chronic epstein-barr (which used to be blamed for CFS) for which there was a test, she got treatment, she got well. I haven’t.

    I think they think I’m crazy, based on my history of depression. And yeah sometimes it’s easier to think I’m nuts than to accept I’ve been ill for 14 yrs and nothing to show for it.

    But I will admit the new findings are scary to me as well. Have I infected my family? What if I’m one of the few who don’t have it, what then? Do I have to wait for years for treatment and what if that’s too late?

    But being belived is so powerful. I’m glad this helps you!

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Push It 11 Sep 2011

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