Journal of IiME Volume 9 Issue 1 board; without their support, enabling me to continue working, I would have lost yet another part of my life. Try telling the man whose leg is hanging off it’s not ‘real’ pain Recently, my husband overheard a conversation at his work. A colleague, who has MS, was speaking to someone and they were clarifying – ME or MS? The reply was, ‘No, the real one, MS’. This hit my husband hard. He is the one who lives with me. It hasn’t just impacted on my life, but his too. Meanwhile, his colleague gets injections for her MS and is able to enjoy a pretty normal life. He’s heard stories of her going out drinking; socialising with friends; enjoying a tipple with lunch, and he knows I can’t do any of that. She was able to go to her work’s Christmas party. I wasn’t able to go to mine. Yet, when her work duties are restricted, nobody bats an eyelid – despite the fact that she’s still managing to maintain a social life. He’s sat with me as I’ve cried tears of pain and frustration – he can see how ‘real’ it all is. I’m not living a normal life. I’m getting by, clinging to each day by my fingertips. So to hear someone dismiss ME/CFS as a condition that’s ‘not real’ is insulting in the extreme. If we take symptoms alone as a mark of illness severity and put them on a sliding scale, then it’s entirely possible for someone with CFS to be living a far more restricted, pain-filled life than someone with MS (I’m using this as an example simply because the issue was raised about that being ‘real’ and the other not being real). And let’s not forget, people with CFS don’t have any medical interventions to help either. Some forms of cancer can have less impact on the body. I don’t say this to undermine cancer, in any of its manifestations (it’s the worst thing someone can be told they have) – I simply highlight it to demonstrate that, symptomatically, there are people who are treated for cancer and go on to live full, healthy, pain-free lives. As Llewellyn King – executive producer and host of the White May 2015 House Chronicle – commented, ‘The world of CFS is dark indeed — an abysmal place of unmediated pain, disability, hopelessness, financial ruin and sometimes suicide. One doctor told me that if she were to have to choose for herself between CFS and cancer, she would choose cancer. “At least for cancer, there are treatments; if they fail, you die. With CFS you are the living dead.” ’ Indeed, there are people with CFS who are wheelchair-bound, then bed-bound and, in severe cases, do lose their lives – either through the illness or due to the aforementioned suicide. By the same token, there are a host of recognised diseases and complaints that present with few symptoms and which are eminently treatable. A broken leg might be excruciating but it’s fixable. The one thing that can definitively be said about CFS is that it’s all about the symptoms. In fact, it’s probably one of the few conditions that is so symptom-heavy and solution-light. Consequently, if I had to hazard a guess why people are so dismissive of CFS, it’s possibly because it’s been a victim of its name. ‘Fatigue’ doesn’t get anywhere close to summing up the array of symptoms that present. We associate fatigue with tiredness, lethargy, apathy; things that aren’t entirely positive. It’s easy to simply dismiss someone as lacking get-up-and-go. It leaves out the recurrent viruses, aching limbs, visual flickers and many other lesser-known symptoms. Unfortunately, the name is vague because nobody fully understands it yet. Even the more medical-sounding Myalgic Encephalomyelitis has been shortened to ME – which carries its own negative connotations and harks back to ‘yuppie flu’. I suspect though, when it’s eventually pinned down and given a specific medical label, it will then be recognised as one of those handful of conditions nobody wants to have the misfortune of contracting. That said, this shouldn’t be a competition of diseases. Whenever anyone is ill, with anything, that person deserves to be treated with Invest in ME (Charity Nr. 1114035) www.investinme.org Page 36 of 57
37 Publizr Home