I tell Mark the immunologist everything, right from the beginning. How well I was, how I could – and did – work a 12-hour day with ease. How everyone in the office got ill but I stayed ill; cycles of symptoms over and over – fevers, mouth ulcers, joint pain, sinus headaches, sore throats, in that order, every three weeks, like clockwork.
“I know it sounds mad,” I say. “But I could set my watch by when I am going to start getting a fever.”
“I have heard crazier things,” Mark says with a smile.
I tell him about the vertigo and when my arms are too weak to lift things. I tell him about how I am still drenched in sweat every night and how I am not fatigued so much as ill. He doesn’t say much. But I’d rather a measured, thoughtful silence than being told to go to the gym/being told viruses can not ever recur/being asked casually whether I have lost motivation and sex drive.
We walk down the carpeted corridor and go through the reception. “I’m here for the AIDS clinic,” a thin man says to the receptionist, and I probably blanch.
Mark weighs me on a wheelchair that seems to double up as scales (?) and then takes me into a room and does unspeakable gland examinations on me (you have glands in places you really did not know you had glands, Internet).
Back in his room, he says: “and what was it like when you did have M.E, after glandular fever?”
“Different,” I say.
“What was your biggest symptom?”
“Tiredness I suppose. Or payback. I would do something one day and couldn’t move the next. I don’t get that now. I just have flu symptoms every three weeks, without fail.”
“Tell me exactly how it happens when you get these episodes. Exactly.”
I tell him, in Billygean-style minute detail and he stares at me and then down at his notes, as one might ponder a Rubix cube or a particularly difficult exam question.
“This is textbook,” he says slowly.
For a moment I think he is going tot ell me I have M.E, or C.F.S, or Post Viral Fatigue Syndrome, or any other meaningless diagnosis. I will apologise for wasting his time, reconcile myself with a relapse of that, pick up the pieces and move on. But he doesn’t say that.
“There is a group of diseases which fall under Periodic Fever Syndrome,” he says. He mumbles something about Familial Mediterranean Fever and something else which I don’t quite catch, since my head is spinning as actual words of diagnosis are leaving a doctor’s lips. “This is textbook. The sore throat – the mouth ulcers. The timing of it, every few weeks.”
“Right,” I say.
“It’s genetic. It’s rare, and even rarer in adulthood. But… somebody has to have it.”
I don’t ask about cures or treatment. I don’t ask him how sure he is, or what blood tests he’ll do. I sit, mute, not taking it in.
“It’s very interesting, immunologically speaking,” he says.
“You’re sure this isn’t M.E?”
“Absolutely, 100%,” he says, looking me straight in the eye. I feel something leave me that I hadn’t even been aware was holding me down. That diagnosis, the uncertain future stretching out in front of me, the strange dichotomy that there was very obviously something wrong but no real physical evidence rendered my time with M.E with a kind of unreal quality; that I was observing hidden boundaries and landmines that shifted and disappeared. I never knew where I was with it. And now here I am with something different; if not Periodic Fever Syndrome then something else: not M.E. That is not how things are anymore: there is a new true. All that work I did, getting better, sorting my mind out, building my body up: it is not wasted. I have not relapsed. I am not there again. I knew it, I think, when my GP said the letters “HIV” to me over the summer; letters I had never heard before that seemed to spell out the sheer weirdness of what I was experiencing.
He doesn’t say much more, other than taking a lot of blood from me and making me promise I would come for more blood tests the second it flares up again, no matter what day of the week. He tells me it’s self-limiting and treatable and probably won’t come back.
I walk around to the front of the hospital and buy myself a gingerbread latte in Costa, sitting alone for a few minutes with my new knowledge. It’s quite hard to explain the extent to which M.E dominated my life; even when completely well I thought of it every day, when I tired easily, when people came to work with colds, when I was deciding how much I could get away with doing on my day off. It took a hell of a lot of therapy to get to a point where I trusted my body – not only to get me home from the supermarket if I chose to go there, but also to support me through a demanding career.
I stir my gingerbread latte and I worry. I worry about how well I feel this week (classic Billygean). I worry about what this new diagnosis means for me. I worry about the likelihood, really, of having two separate, self-limiting immune illnesses in five years. I worry about how much damage has already been done to my career. I worry about my body and its mutated genes and the very real immune things bubbling away beneath the surface as my wrist aches slightly as I lift my drink. I worry about how everything has changed this week: from getting better to quite a lot better, from no work to some work, from no literary agent to an interested literary agent who may well impose deadlines on me which I will have to manage alongside being a lawyer. I shake my head, marveling at the first-world nature of all of my problems, how I would have done anything to have these sorts of well-person’s problems even a month ago; how the simple act of being able to feel mostly okay while out for a cup of coffee means so very much to me and my life and my happiness.
I get out my phone and I call MindReader. “You were right,” I say of his optimism about this appointment, the one I dismissed as likely being as useless as all my other hospital appointments after I had glandular fever. “I have a diagnosis,” I say.