As many of you know, I have ME. A little while ago I wrote a line (‘I even feel a little guilty because I know that so many of the people around me have real, genuine problems’) that some people may have taken to mean that I don’t believe that ME is real. If you read the rest of the paragraph, you’ll see that in the very next sentence that I state that ME is a real condition. So what did I mean?
I was referring to two aspects, one of which is clearly identified in that second sentence. ME is not always understood, appreciated or even believed in by the people around you. People, even the so-called experts and authorities, don’t ‘get’ conditions which aren’t tangibly physical. If you have a broken leg or even a tumour, you have concrete evidence of your illness and receive sympathy. What evidence is there of ME? Well, you have to look a little closer and that’s where the problem is. People don’t. They say things about how they’re always ‘so tired’ too. I think to myself, wouldn’t it be great to be exhausted at the weekend after working a forty hour week and doing all my housework? I’m even more exhausted than that as soon as I wake up. If you don’t have a concrete limitation then people can’t see what is holding you back and they expect more of you. Why aren’t you doing that? I’m left to carry heavy loads because there’s nothing to stop me. My arms work, don’t they? Other people see their own limitations and know my pre-illness abilities. I used to be strong. I used to be independent. They don’t accept the change. Some people are caught up in their own perceived limitations, some folk always expect other people to carry things for them (whether physically or metaphorically). They don’t see, and sadly aren’t even interested in knowing, the distressing symptoms that I feel when I lift that heavy thing for them. I get visual disturbance, excruciating pain, weakness, nausea, dizziness … And that’s even before the ‘fatigue’ kicks in later.
The second aspect? Well, that’s harder to explain and is what I was alluding to in that suspect statement. I feel guilty about being ill because I shouldn’t be. I shouldn’t be ill. I don’t deserve to be ill. Other people do. OK, that sounds screwy even to my Depression-influenced thought processes. But, bear me out! No one deserves to be ill. But some people are more deserving of help, support and understanding when they are ill. More deserving than I am. I read of other people’s sufferings and struggles with this illness and I see that they are more ill than I am, I question the seriousness, the severity of my own ill health. I tell myself that I am just making a fuss, that I’m allowing laziness to hold me back. Do you see what I mean by this ‘deserve’ word? It’s sort of the inverse perhaps of how you think the word is being used. And it’s not something that I can express in concrete terms. Think of the noble Victorian invalid who was doomed to a life of bed rest and shawls after some heroic deed. They deserved to be ill. The little wretch who went ice skating on the only partly frozen pond after some express warning not to? Well, perhaps the rest of the world would say that they deserved to be ill after all! Is illness a meritocracy too? But, if you’ve been a good person all your life then surely you deserve less such comeuppances anyway? You can see my confusion! However good people deserve our attention, support, help, care and sympathy. I don’t. I should just try harder and stop making a fuss. And other people are always more ill than I am. That’s what I think I was trying to say.
Do I come across as completely screwed up? Probably. I have had Depression in my life for a lot longer than ME and I am, sadly perhaps, accustomed to seeing the world through its glasses. I am slowly realising that such viewpoints aren’t always entirely helpful or beneficial. Sometimes my self-view is also compromising my physical health and happiness. But I thought that I would clarify that I do believe that ME is a real condition. For everyone.