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.