To Those Who Judge
I have Chronic Fatigue Syndrome, myalgic encephalopathy, myalgic encephalomyelitis, chronic fatigue immune dysfunction syndrome, post-viral fatigue syndrome, yuppie flu, or any of the other multitude of names it has been called in the past. Maybe that is one of the reasons you find it so hard to believe that it is real - because no one can really tell you what it is. William Cowper once said, however, that 'absence of proof is not proof of absence'. Just because I cannot show you a blood test, an x-ray or a scan that will prove there is something wrong with me, does not mean that I am in any less pain or that I am any less ill. It just means we haven't developed the test yet. Remember, when you say, 'But you look all right,' that appearances are quite frequently deceiving. Can you tell, just from looking, who has asthma? Diabetes? Cancer? And you may well be seeing me on a good day. You probably don't see me when I'm crawling to the bathroom because my legs won't hold me up, or crying in bed because I am in so much pain. You are probably not the person who has to cut up my food and feed it to me when my arms don't work, or hold me upright to feed me painkillers. But maybe you do, and you resent it.
It is easy, and maybe even understandable, to think that spending most of your time in bed for days, weeks, months and years is an easy ride. Think again. There is a vast difference between that lazy Sunday spent reading the paper and eating toast and doing everything at your leisure, and the terrifying trap that your bed becomes when you suffer from chronic fatigue syndrome. 'Fatigue' itself is a pathetic word for what really happens. Staying in bed is fun if you can enjoy it; it is not fun if you are in pain, or feeling so nauseous that you cannot move, or maybe even wondering if this is the day it might get too much. Sleeping all the time may sound like an easy life, but when you lose days because you've been asleep, or you lose friends because whenever they call or visit you're in bed, or you lose your life as you know it because you have to leave work or university, then it becomes a prison.
And it is maybe worse when the insomnia sets in. Many people find it impossible to accept that someone who is so tired all the time is still up at six a.m. I am writing this at half-five in the morning because I cannot sleep. Since all this began, I have become a nocturnal person - not the wild student type of nocturnal who is awake at sunrise because they've been having fun, but someone who's energy peaks at about midnight, and is useless all through the day. 'Try and go to bed earlier'. I have done that. Tried that. For a long time, and at great expense to my health. I was in bed at 10pm tonight. I eventually got up again at three because I was so frustrated at myself that I needed to take my mind off it. I am lucky that I'm able to do that tonight - I have enough energy to get up and do something. Some nights I am so tired that I can't even open my eyes, but still I can't get to sleep.
And just to make it even harder for you to accept, the symptoms are variable from person to person, and within each person themselves. It is a cyclic illness by nature, and it is just as hard for us to learn as it for you that, even though I am feeling better today, and I can walk around unaided, I will probably be bedbound again in a few days. Pointing out that I was ok last week and that I looked 'so much better yesterday' does not help. Please do not make me feel guilty for not being better. It isn't a nice curve upwards after the initial strike. It is a long time of ups and downs, relapses and remissions, and, in time, the remissions should be longer than the relapses. But it takes time. Just because you had a friend who got better in six months does not mean that, if I don't, then I'm malingering. Just because I could talk to you for an hour yesterday does not mean that I can today. I may be able to walk fifty feet, but that does not mean that I can go any further.
Remember that, when people say that a gradual programme of increased exercise is the best treatment for CFS, that 'gradual' may mean over months and years, and that 'exercise' means something very different to us than it does to you. When you sprint for five minutes, your muscles may ache, your chest may hurt, you may feel exhausted and dizzy. That happens to me if I walk, with a walking stick, for five minutes, or if I get myself a glass of water, or cut up my food. My muscles do not work the same way yours do, so do not judge me relative to your abilities. Exercise, for me, may be getting out of bed, and it is likely that, when you see me watching a video, you are seeing me working to my full potential for today. Please do not think that just because I am not walking a mile every day or even getting up to make a cup of tea that I'm not trying. I push myself to my limit every day, because I'll be damned if I don't use the energy that I do have. I don't have a lot of it. 'Trying to build up my stamina' is not going to help, and it will more than likely make me more ill than I ever thought possible. I know. I've tried it. I've tried everything. I have tried pushing myself past my energy barrier, and I have paid dearly for it. One day of not listening to your body can send you to bed for a month. CFS does not forgive you if you want to have a day out, it does not care if you've made arrangements or if you 'just want to get this last bit done'. It just switches on the pain until you learn not to do it.
That's what the healing process is for CFS - learning how to work within it. Talk of 'beating it' is not helpful - if you try to beat it, it will hammer you back down with a vengeance. Accepting that you have to just take it until it goes away is contrary to all the cultural preconditioning of our time. There are diets that you can use and treatments you can have that may relieve the symptoms, but they rarely, if ever, cure the CFS. Learning to accept your limitations without trying to break through them is possibly the most difficult part of the initial stages. Hell, I'm still learning it after two years. We, just like you, have always been taught to 'just get on with it'. Don't think for a moment that we haven't tried that. And it's made us worse. This does not mean that we are 'giving in' or 'not trying', just that we do not want this to last any longer than it has to, and every relapse you send yourself into that you can avoid lengthens the illness. We have to learn to live within a budget of energy, and we have to accept that, once we have exhausted it, we don't get any more until we have recharged. It is not an easy lesson to learn. None of these lessons are.
However, they are still lessons, and by their very nature they make us stronger people. Smaller things can make us happy, and we notice things that many people do not, like flowers growing in the cracks of the pavement, or a bird's flight. Not moving so fast through life, we do get the time to 'stand and stare'. We learn what is really important to us when we are forced to give up most of our active life. We find out what our priorities really are when we have to take out of our lives the things that sapped our energy before, like negative people or tasks done out of guilt. We learn that the house does not have to be pristine, and that we might just be valuable people, even if we can't work. In a society built so much on achievement, it takes a long time to learn that we have a place in it just by being alive. Our achivement is getting through each day, and if we can find something to smile about, then we are doing well. We can laugh and joke and have fun just as much as the next person; we just can't run a marathon while doing it. If we appear happy, it is probably because we are happy. When you have a chronic illness, you learn that you can smile and be happy even if you can't leave the house. It is difficult, and self-pity does take over sometimes, but you cry, you moan and sniffle for a while, and then you carry on living. Being happy does not mean being better. I might still be in pain, or tired, or nauseous, but I can still be happy. It's what makes getting better worth it.
If, after all of that, you still choose to judge, then step into my shoes for a moment. My shoes that I may not use for weeks because I can't leave the house. Before you call me an attention-seeker, try the loneliness of losing most of your friends because you're too tired or too ill to see them or even talk to them. Before you say I am malingering, try lying in bed at night unable to sleep because you're in so much pain. Before you say that I would probably be better by now if I tried this or that treatment, try going through punishing regimes just to see if it'll make a difference, or having needles stuck in you to try and relieve the pain, or downing a cocktail of supplements and drugs just to be able to cope with life. Before you say that I'm just not trying hard enough, try getting through what you would call a normal day, but with CFS, and deal with the weeks of recovery that you need afterwards. And before you say that this is an 'easy ride', try the humiliation of someone else having to shower you because you can't hold your arms up. Try pretending that you're not hungry in a restaurant to hide the fact that you can't cut up your food. If you love to read, as I do, try not being able to - reading each word and not being able to make sense of it because of the fog in your brain. Try forgetting what you're saying in the middle of a sentence and try covering it up. Try feeling that no-one should want you because you're a burden, and that everyone who has to look after you will end up hating you because of it. Try not being able to kiss your lover because you're so nauseous, or not being able to have a conversation with a friend because you can't concentrate on it. Try losing every plan you ever made, and realising that, for the forseeable future, you can't make any more. You can't even plan what you're going to do tomorrow because you don't know how you'll be feeling. Try losing what you built your life towards. Try watching your life pass you by while your friends get degrees, jobs, get married and have children.
And, once you've tried all of that, and dealt with it because there's no other option, then try smiling and still keeping hope for the future. Try not to give up. If you can do all of that, then you might be in a position to judge me, but, until then, accept that we are far from weak. In fact, you may never see such strength as you see in us.