Apologies and Opinions

Hello again, my lovely loves,

Thanks for all the support I received after my last post’s discussion of my difficult doctor’s appointment.

As I mentioned last time, I wrote a letter to explain how I felt about the situation, and I’m happy to say Doctor B apologised!

I got a very nice letter from them actually, saying that they most definitely did NOT think my ME/CFS is in my head, and that their concern regarding hypnotherapy was just to make sure I’m supported during my illness, and while they honestly thought it would be better for me to go home straight after my appointment, it was clear they had been mistaken.

They also said that they had taken what I said on board and that they’d try to make sure no one had the same experience I did.

I don’t know about you, but I think it takes a lot of guts to respond so gracefully to criticism, no matter how well-meant or carefully worded, so I was happy to send a letter back saying that I was glad my worries were unfounded, and that I’d see them the next time I needed a home visit.

I know a lot of people thought I should complain, but to be perfectly honest, I’m just glad that we’re on the same page, and that we understand each other better than we did before.

There are a lot of people whose doctors aren’t nearly as understanding, or open to criticism or change (or even to the fact that their patient is ill), and the month between the appointment and receiving Doctor B’s letter has really shown me how much of a difference feeling understood can make to how you feel (and how well you handle your condition).

I’ve said before that plenty of doctors don’t believe ME/CFS is real, but what I’ve not said is this: hats off to those sufferers who deal with those doctors on a regular basis, because it is so undermining to feel disbelieved by a medical professional.

You lose a lot of respect from others when you become chronically ill, especially if you can’t work, and one of the hardest tests is not losing respect for yourself along with it. To do that without the constant wholehearted support of all those around you, medical or otherwise, must be so incredibly demoralising, and I salute you.

I also sincerely hope that, if the letter-writing route doesn’t work for you, you’re able to find a better doctor.

This whole debacle has called to mind a discussion I had with a friend not long ago bout a book called "It's All in Your Head: True Stories of Imaginary Illness”, by Suzanne O’Sullivan.

This book makes me very angry because, apart from its patronising and clearly incendiary title, it discusses at length how certain illnesses, including IBS and ME, are psychosomatic, despite their being plenty of evidence to the contrary.

In the interest of fairness, I must say it does make a good point that psychosomatic illnesses are illnesses, and so aren’t the sufferers fault or a choice they make, and that the current stigma around psychosomatic illnesses isn't justified.

But, given that stigma, it seems very irresponsible to label certain illnesses that way if there’s evidence to suggest that they’re not.

The Countess of Mar, who is part of the ME Association, had quite a lot to say on the subject, so I’ll link her response the book here.

Mine and my friend's discussion on the book, and the Countess’s article, ranged into the mind/body link, and the likelihood that psychological means could provide us with help or a cure. 

I agreed that there are some psychological elements to ME (as with most long-term conditions), and that psychological tools can prove useful in the everyday handling of ME/CFS, as well as in the monitoring of future warning signals for the prevention of relapse.

I am, however, rather firmly in the “it’s a medical condition” camp.

My friend, who also has ME, wondered why I seemed so set against the idea of it being psychosomatic, so after our discussion I set myself to thinking, and I realised what it was.

Believe it or not, my problem with the idea of ME being psychosomatic is not that it's a mental issue rather than a physical one.

If there was compelling evidence that walking over hot coals would cure me, then I would sign up for it.

I am willing to admit that there is a chance that I am wrong; that whatever triggers this illness may be mental, and that the physical evidence proven could still be a result of that. The mind/body link is incredibly complex and still isn't fully understood by people much, much smarter than me.

But I wonder if the people who insist that it is psychosomatic would extend me the same courtesy.

If I went to a psychiatrist who maintained the same belief as Suzanne O'Sullivan, and threw myself wholeheartedly into their therapy, and saw no significant improvement in my symptoms, would they be willing to hold their hands up and say, "well, maybe it is a physical disease after all"?

Or would they, as I suspect, simply say that I hadn't truly accepted the reasons for what was happening to me?

At what point would they be willing to consider they were wrong? Months? Years? Decades?

Because the nature of psychology is rarely so finite as to give you a yes or no answer, there is potentially no point at which this would happen, and in the meantime I could very easily start an unhelpful cycle of self blame over not being able to "accept the reasons why this was happening to me".

I know it could happen, because even now I often blame myself for not looking after myself better and getting ill in the first place.

It's taken me a long time to start forgiving myself for that, and the idea of putting that in peril seems like a very bad move to me.

It is, I concede, entirely possible that it could work, and I could be cured, so, despite my doubts, it's an extremely difficult thing for me to form a solid opinion on.

I don't like the thought of cutting off avenues, no matter how unlikely I think it is that they would help.

But even ignoring the medical evidence, ME/CFS was treated as a psychosomatic illness for years before I got it, and many of those people are still suffering.

You could say it was because of the stigma of psychosomatic illnesses, that they didn’t get very good objective treatment, and that that prevented them from recovery, but… how does that help them? Or me?

I think, mainly, I don’t think that treating it as psychosomatic will help us a whole is because that’s kind of how I treated it in the beginning, and it got me nowhere. 

I tried so hard to put mind before matter, to be the same person I had been even though I was so sick, had counselling and went on antidepressants. And I’m still here nearly three years later.

As I said to Doctor B in my letter, the only thing that’s shown me a steady and stable improvement is admitting I can’t be exactly the same person anymore, treating this as a physical illness and forcing myself to rest.

Provide me with compelling evidence that psychological solutions can cure (or even significantly improve) ME/CFS, and I will be there with bells on, but until then, I challenge you to keep an open mind.

In the mean time I’ve signed up to be part of a Biobank study looking into ME/CFS.

They’re actually still looking for both sufferers and healthy controls, so if you live in the Cambridge area, Norfolk, Suffolk or Greater London, you too could take part.

A bunch of my friends have offered to be healthy controls (lovely people) so if any more people in the London area want to sign up maybe we can coordinate you so the nice nurse can take your blood and information all together.

It takes around 45 minutes, you can’t have any major diseases other than ME/CFS, and you have to be 18-60. If you’re a control you can’t be related by blood to an ME sufferer, and if you’re a fellow sickie you have to have been sick for six months.

Email Caroline at caroline.kingdon@lshtm.ac.uk with the subject as either “possible severely affected volunteer” or “possible control volunteer”.