That which cannot be seen – the hidden illness

Yesterday, Oriah Mountain Dreamer posted this video on her Facebook page. It is a video with information about ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), an illness most often wrongly rejected as laziness, lack of willpower, hypochondria or a psychiatric or psychosomatic condition. But it is a very real multisystemic illness, classified as neurological disease by the WHO.

ME is not easily diagnosed, and there are not two completely identical cases. As many as 25% of those affected are fully disabled, some housebound or even bedridden for years on end, while others may suffer in varying degree. There is no entirely known reason, although various viruses are believed to cause the initial infection. Most recently, there have been discoveries indication a link between ME and MLV retroviruses. There is no decisive test that confirms ME, even though some claim that MRI scans can show changes in ME patients that aren't there in normal, healthy brains, and there is, today, no cure.

So why am I writing this? In mid-December, my GP diagnosed me with ME, after various appointments and blood tests during 2010, as well as ways of trying to exclude other reasons, such as seeing if I'm on a too high dosis of thyroid hormones (which I've been on since 2000 due to hypothyroidism) or whether the fatigue can be due to gluten intolerance. None of which I am. During my first appointment with my GP, who turned out to be unusually knowledgeable about tiredness, sleep, and similar problems, when he heard my medical history, me mentioned ME/CFS after about five minutes, and now it seems he feels that it has been confirmed.

Here's my background. In september 2004 I realised that I was recovered from anorexia. *fireworks, champagne corks popping* In early March 2005 I did my Reiki 1 and 2 course and initiation, followed by step 1 of tactile massage training, and during the second day of massage training fell ill. I took that as a sign of my immune system being finally functioning and somehow rebooted from a weekend of healing, and as a sign of recovery. However, the cold/flu I got was nasty and lasted for weeks. Since then, I have never fully recovered my strength; I have never felt fully rested or energised, fatigue has been a constant companion. I can have a couple of good days, followed by days when I'm so tired I feel feverish, nauseous and can't think straight. And it's not the sort of tiredness I can rest away. For years, I dealt with the tiredness in three ways: Ignoring it, thinking I was being lazy or lacking in willpower, or that I was pushing myself too hard and thus over and over again depleting my energy. I thought it was burnout syndrome, or residual stress after too many years on the dark side of the mirror (ie eating disorder), and tried to rest more, focus my energy better etc.

I've tried to cope, I really have. And I have been active: managing my company, never able to work full time during an entire year, but at times more than full time, doing my first spiral in Glastonbury, spiritual work, immense growth, writing, selfhelp work, dance, exercise etc. As the economic times have changed, less work has come in, and the stress gotten worse. That's when me being so tired has become a problem, although one that no one else has ever noticed. Because I do my work, as long as there's work. But the rest: marketing, finding new clients, writing letters and getting myself "out there" to various companies/potential clients – has been left behind. I've scolded myself over and over again for not doing it, and hate to say that I just haven't had the energy, because to most people, I am full of energy. And because I am afraid to hear what I have also been told: that I have to do what it takes and that I can't keep procrastinating. Well, that's what I've been saying to myself, too. But lack of work means constant financial stress, anxiety, and a tiredness beyond belief. I should be on partial sick leave, and I so deserve a chance to once and for all be allowed to rest, heal all the old stress, and be given an opportunity to get back, but I can't. I have bills to pay, loans to mortgage and a tax debt that might ruin me. The sick benefit I could get is calculated from my income, meaning it's low. And it's getting worse. Every cold takes longer to recover from, my mood swings from good to really, deeply low and anxious with the alternating energy levels – to a point where a friend almost suspected that I was bipolar – and I don't know what to do. Because I need more work coming in, or another form of income.

Then last winter someone, I think it may have been my brother, mentioned ME and shortly after that, I realised that I actually know exactly when I got this tired. It can be pinpointed to a virus infection. From then, I saw my GP, waited for months and months to see him again, and now, this. I still don't know whether the diagnosis is there in my medical chart or not, or if I could actually get some form of help or benefit for it. So far, I've gotten medication against the fatigue, but while that works pretty well, it means I overstretch my physical boundaries and overexert myself. And I don't know where to go from here. Would having a diagnosis help me get some sort of disability benefit, or other form of support? From what little I have read, I can see that several of my other so far strange problems can actually be common parts of ME, which gives me some understanding, but I am still not sure. I hope to see a specialist in 3-4 months' time, and take it from there.

My GP said that I must have a lot of willpower. I guess I do. Giving up is not something I know how to do, and I am terrified of becoming a victim, someone who hides behind a diagnosis instead of trying and doing the best and most I can. And yes, I have problems accepting this. That it could be close to chronic. That it could be without a cure. That the most I can hope for is learning to live with it, hoping that it will in time get better instead of worse. I can't accept that I wouldn't be able to control it, or make it go away. That no amount of positive thinking will make it good. Just better. I know that I am high-functioning, but compared to who I used to be, I am beginning to feel so tired that it scares me. And this isn't something people can see. It's hidden, and I hide it well (caffeine, makeup – being a makeup artist sure helps, tons of guts and "never give up, never surrender", and if needs be with medication), and I do my very best to deny it for as long as I can. When I am so tired that I literally shiver, feel feverish, nauseous, can hardly eat or barely stand up long enough – I stay at home, hidden behind the computer. That is how I cope.

But this is one step in my acceptance process: writing about it. Getting it out there.