Simon

You two could obviously spend all day talking about biblical studies, but what’s interesting me is just thinking about the context of that diagnosis of ME and CFS because, even just 15 years ago, it was a very different world in which the medical consensus was quite unified around some very negative stereotypes of what that illness was and some very ‘special’ ways of treating people with that illness.

Charlotte

Yeah, disgusting.

Simon

We’ve got a mutual friend who’s spending the limited energy she has campaigning around some of those prejudices and how they can be broken. So maybe can you tell us a little bit, 15 years ago, where were you in terms of your faith and your church context and what it meant to get ME in that context?

Charlotte

Yeah. Well, it’s 2008-ish I’ve just finished my masters – I was working full time and studying a part-time masters that was supposed to be two years squeezed into a year. I’d just turned 30, I’d finished my masters and was working for a number of churches in Camden Town. So, altogether, I was probably working 70+ hours a week. Quite happily doing that, thinking that was a good plan and, as many people with ME do, I got a virus. Not even the worst virus I’ve ever had but it didn’t get better. I got a cough. All the things that people now think of as signs of long COVID. So I got a really bad cough that was treated separately. I got given an inhaler and they just kept saying it’s an undiagnosed respiratory illness, but it wasn’t. 

None of the symptoms were taken together, as if they were one illness. I was told I was depressed and I was given antidepressants, and I was told to do all the things that you do for depression. I was told to exercise and make sure I went out into the sunshine and keep doing things and not to stop. All the things that we know are absolutely the wrong thing for ME. I do think one of the reasons that I got diagnosed with depression was that I was a woman in my 30s, and so it must all be in my mind. 

So no matter how much I told them I was still tired, my mood had lifted, my life was pretty good,  – we were moving to Brighton so that I could do my PhD, and I’d just written my PhD proposal. I was enjoying all of that. We moved to Brighton the next year and it was then I knew it was something else. Because I really, really was enjoying all the things I was doing, I didn’t have any problems with that, but I just kept being told I was depressed and we upped all my meds and I kept going to the gym until the someone at the gym refused me entry because I’d fainted two or three times. We had a locum doctor who was a specialist in weird things. She gave me a list of the symptoms and I ticked 16 out of the 18. When she saw it she said, “why haven’t you told us about these pains that you have, and all the other things?” I’d been told by a doctor that it was definitely depression and I had believed the experts and gone along with it. 

So I made myself very ill, and I believe I wouldn’t be as ill as I am now if I’d had the right treatment at the beginning. I did all the wrong things. It got to the point where I thought I had a heart problem because I couldn’t walk up a hill that I always used to walk, but I can’t I take 3 steps and I’d have to sit down. It was terrifying. So finally, when I got the ME diagnosis, it was a relief to have a label that meant I wasn’t making it up. And that confirmed I wasn’t being listened to. Unfortunately, what I was offered was CBT, which is now known to be an ineffective treatment for ME.

I didn’t know any other people with chronic illnesses. I didn’t know anyone in church with chronic illnesses. So, I really struggled with with processing my illness theologically. I have quite a good theological brain, but I had nowhere to process that new reality I was in. And in the churches I’d grown up in disability is not a thing that was particularly talked about and when it was, it’s in terms of healing, getting better. It’s a problem to be solved, right? so I didn’t really have any way of dealing with that, so I didn’t deal with it. That’s what I’d say. I just sort of carried on and got sicker and sicker.

to be continued…

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