A TIRADE.

I had an encounter recently with my housemate, that sheds a little light on the way I am perceived by people, especially by those who have no idea about my CFS, and the strange in-between world that my condition forces me to live in. I have already written a little about this before here.

A brief word here about my living arrangements. I live in a shared semi-detached house in an estate on the edge of a medium sized town. There are three bedrooms in the house, though only two are now occupied, so I basically share with a woman in her forties from an African country who has been in Ireland about four years. Let's call her K. K was here when I moved in, about eighteen months ago.

K and I had an argument about the electricity bill last week, a common enough occurrence I imagine for people who share a living space and who have communal bills. She has a thing about the immersion water heater, and doesn't like anyone to have it on for longer than fifteen minutes. From my perspective she has a bit of an obsession about this. This is not our first argument about this matter.

Anyhow, I was tired of her constantly blaming me on the odd occasion when the bill is high, and told her so. And then she launched into a tirade. This is not the first time she has let fly with anger and annoyance at something apparently innocuous. But this was something else again. In no particular order, she told me that...

- I am a bad man, and that is why I have no girlfriend.

- everyone in the neighbourhood is laughing at me. I am a teacher and have a job with status, and yet I am living in shared accommodation. Why don't I just get my own place?

- I am selfish and believe that I own the house.

- she cursed me, hoped that I get sick with asthma.

There was other stuff too, stuff about cooking. She doesn't like it when she is cooking in the kitchen and I come in to use the cooker at the same time.

She also mentioned one particular occasion, when she was already using the oven, and I put my food in next to hers. There was plenty of room on the shelf in the oven, so I just put what I was heating up in beside her food. She didn't say anything at the time, but the day of the argument she brought this up, enraged that I would do such a thing. It was selfish, she claimed. The smell of my food would get into hers.

A lot of this was incoherent, and in the form of a rant. As anyone with ME knows, arguments or confrontations can be very stressful and draining. My hands were shaking after about ten minutes of her tirade. I didn't sleep very well that night, and was still a bit shaky by lunchtime the next day.

It was the physical effect of the stress caused by a confrontation that effected me, the actual content of K's diatribe didn't bother me much. I knew that most of it was either nonsense or totally uninformed, and was really more of a reflection of her  unhappiness and frustration with her own life rather than any real valid complaints.

Some of it, looking back later, I actually found funny. Her cursing me is really just risible, and her point about "the food smell" of my dinner going in to hers is laughable. She certainly has an issue around food, uses all her own cutlery and plates and saucepans rather than the communal ones in the house, and never eats a meal anywhere but her bedroom.

Besides, it is difficult to understand how she could reasonably have so much bitterness and anger against someone who she hardly even sees. We really have very little contact, we each keep to ourselves and she rarely comes out of her room. This keeping to her room dates back from before I moved in, so it is not a reaction to my presence.

I did find it interesting though, when she made one particular point over and over again in an attempt to hurt me, which is that the neighbourhood is laughing at me because I am a teacher living in shared accommodation at 42 years old. Now this I know for a fact is nonsense, "the neighbourhood" doesn't care about or think about me in any way, people here get on with their own lives and I play no part in their thoughts.

What I think she is referring to is the family next door, who she has a connection with, through the marriage of a family member of K's. It made me think that they have been discussing me at some stage, and obviously this idea has come up that I am apparently a teacher who is - they assume - earning good money and yet is living in this shared house.

I have never spoken to K about my CFS, and have never explained that I really work basically half a week, and can do no more, and thus can't afford to live on my own, much as I would want to. We have never been friendly enough for me to go into the whole story. So people who I have almost no contact with are making assumptions about me, and I found that strange and curious. I couldn't care in the least what these people - or K herself - think about me, but it felt briefly intrusive that they were obviously discussing my situation without really knowing the first thing about my life.

And then there was the girlfriend comment. K herself is married, though her husband is back in her home country. She has asked me this before, about why I don't have a girlfriend. I was non-committal, and again didn't go into all the complications about trying to meet someone and continue a relationship when your energy levels allow you just about enough leeway to teach a few hours a day and rest for the rest.

I have never explained to her, about the potential difficulty that meeting someone entails, and I wasn't about to go into it during an argument in which she seemed to be trying to hurt me as much as she could. Again though, it shows up the potential for misunderstanding that living with this condition causes, and the enormous gap that exists - in general, I believe, and not just with CFS - between what people assume about each other from appearances, and the truth, which is often hugely more complex and layered than people have imagined.

To her small credit, K apologised the next day. It doesn't change the fact that her motivation was purely to upset me, and to get at me, though it did show that she realised that she had gone too far. Her tirade is not going to change anything substantially in the house, we weren't exactly friends before this, and, as I said, rarely saw each other. It has, however, shown me a nasty side to this woman that I have to share a living space with, which makes me wary of trusting her in any situation in the future.

The incident shows how my ME/CFS effects my life, and how it leaves me in a situation that is unusual and not easily explained, and that other people don't understand. Even if they knew about my condition they wouldn't really get it. Though it really hasn't left any lasting upset, the thing about having CFS is that you nearly always have more to worry about than some housemate's insane ramblings and insults.

It does make me feel a little more vulnerable, however, knowing what K really thinks of me and all the bitterness that she has built up. I live a fairly quiet life, and it is curious to see that some people are intent on commenting on that, and questioning this lifestyle that I have, which has been forced on me by my CFS.  

A HIDDEN LIFE

The majority of people I know don't know that I have chronic fatigue syndrome.

In a way I am lucky that I can pass for a healthy person, I am not so affected that I am prevented from being out in the world, at least part-time.

And it is not as if I have been deliberately hiding anything. It's just that with people that I don't know really well, it just hasn't come up. I meet them socially, or in a work setting, and, because I have been managing this condition for so long, I have usually rested enough to be able to function more or less normally, at least for an hour or two.

Though it is true that I am not overly revealing about my state of health. It sometimes seems like too much work, telling people about ME. Explaining the ins and outs of the condition, how it effects me, the causes and treatments and all of the politics of it, is exhausting in itself.

And it is so easy to misunderstand, as there is so much misinformation out there about CFS. Someone may have half-heard about one misguided report, like the one inThe Sunday Times last week, and begin to believe that you are some kind of crackpot.

There is also the fact that if people don't know that I have this condition, then for the time that I am with them, I can pretend too. It gives me a space where I can be, at least temporarily, how I would be if I were well.

So I think that that is the key. It's almost as if if people don't know about my condition, then I can, for a short time, be as they see me, a reasonably active, healthy person.

Yet the truth is that I am in a way playing a role. There is this whole other truth about my life that casual friends and acquaintances don't know about. They don't see my periods of exhaustion, or don't realise that if I meet them in a pub then I have rested a lot of the day before to be able to make it there.

They don't see me struggling with food and intolerances, and they don't see all of the medications and supplements I take each day. They have no idea about the controlling force in my life, the obstacle around which I have to organize every other thing I want to do.

I am a half-ill, half-well person, and most of the people I know only see the healthy side. And that in itself is a difficulty, as it limits how close you can be to people if they only know half of you.

But I don't see a good way around this. If I do manage to summon the energy to go out at night, or to any kind of social event, the last thing that I want to be talking about is CFS. And so in my day to day life the opportunity simply does not arise to talk about what is in essence the most vital part of my story.

For example, someone I know recently suggested that I should do the Camino de Santiago, where people walk twenty kilometres a day on a journey through northern Spain. I couldn't even begin to explain to her how utterly impossible even the idea of this would be for me. I simply didn't have the energy even to begin the explanation.

So I go on like this, living an almost secret life. I imagine to a lot of the people I know I must appear quite opaque, someone who is all surface and no depth. I think many people wouldn't really be able to grasp the idea of me as dealing with illness when they see me as someone who teaches, who has a social life, who in fact organizes events in a voluntary organisation I am involved in.

I can do all this precisely because I have adapted to my lack of energy. But the truth behind it is hidden, and by necessity will remain so. CFS is just not something that I feel I can explain in just a few sentences to someone I don't know well. The impact is too enormous. So this is the way I am now, living my private, reduced life at home when I rest, and pretending to be someone that I am not when out in the world.

It at times appears surreal, and makes me feel a bit detached from those around me. But I can't see another way of approaching my everyday life.