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3 Ways Talking Therapy Helped Me Come to Terms With My Chronic Fatigue Syndrome

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So, having a chronic illness inevitably means you’re going to experience some psychological factors along the way. How could you not? You’ve probably spent years being unwell, seen countless doctors, undergone countless rounds of tests and probably been told a few million times that there’s absolutely nothing wrong with you. “All your blood tests were normal, Mrs. Galley,” — the “good” news delivered by a 12-year-old junior doctor with acne. You’ve probably had infection after infection, had to take so much time off work you’re on first-name terms with the ladies in HR, and questioned your own sanity more times than you can remember. (I’m not mad, I am feeling this ill!)

And then it happens. You get the diagnosis. In my case chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). So now what? There’s no magic pill to make it go away. It can’t be cured and there are approximately zero specialists working in the NHS. You won’t get referred to see a consultant in CFS because they don’t exist in the U.K. (Well, I certainly haven’t met one, a bit like unicorns, but I’m happy to be proved wrong — on both unicorns and ME consultants). I did get referred to a CFS/ME clinic run by an occupational therapist with a waiting time of approximately five months. You feel like you’ve run a marathon (visiting every department of the hospital on the way), and finally got to the end. Yet instead of a medal, you get handed a stinking turd (the turd is the diagnosis — just to be clear! No one actually gets a turd.) I had no idea how I was meant to feel, and that’s when I found talking therapy.

Finding the right therapist or counselor is key. I was lucky to find the wonderful Jamie; he was easy to talk to and he always gave me a cup of tea! Therapy is a very personal thing and this isn’t the place for me to share the ins and outs and the nitty-gritty of what went on in those sessions — mainly lots of tears, snot and a few thousand used tissues. What I want to share is some of the themes that cropped up in case they resonate with you, and can maybe be of some help.

1. Guilt: It’s my fault I’m ill.

This is a biggie for anyone living with a chronic illness, and probably the most damaging and self-destructive of all the emotions. I truly believed for too long it was somehow my fault I was ill, and I just needed to try harder to get better. I couldn’t deal with my diagnosis as I felt that by accepting I had CFS, I had no control over my recovery. Every day I couldn’t get out of bed or shower was another reason to berate myself for being weak. The guilt of not being a “good” wife, mother, friend or colleague just ate away at me and debilitated me further.

I remember one evening waking up and hearing my youngest son leaving my room. I glanced around and saw two cookies on the bedside table. “Mummy, you’ve been asleep for hours and you need to eat.” Guilt practically swallowed me whole that night! It whispered in my ear, “you’re a terrible mother and you’re letting everyone down.” That was my lowest point.

Therapy helped me to accept my diagnosis was real and not my fault. Accepting the diagnosis and recognizing the guilt meant I could move forward with my recovery and start caring for myself rather than “fighting” against it. Gentle self-care and pacing are crucial with a chronic illness, and I’m just starting to feel less guilty about that. It’s a work-in-progress!

2. Grief for the healthy person I used to be.

Sometimes it can feel like you’ve been ill forever, and for some people with a chronic illness, they’ve spent most of their adult life unwell. I feel like I can pin it down to about five years ago, when I had a kidney infection I just never really got better from. One infection led to another infection and the rest is history. But some days, I can still remember that woman who woke up and didn’t feel like a train wreck; it makes me truly sad.

I can’t say that pre-chronic fatigue, I jumped out of bed and met the sunrise with a kale smoothie and a morning mantra! More like rolled out of bed at the last possible moment with a fart and a long list of expletives. But my body felt like it could cope with the day ahead and wouldn’t let me down. I didn’t have to pace myself or take a mountain of medication, or even think about what the payback might be if I visited a friend after a full day at work — 24 hours in bed, if you were wondering. Too often, we cling on to the past and resist change, mainly because it’s bloody scary! But also because moving on means letting go. Therapy has helped me to acknowledge the grief for that (semi-) healthy person and start to let her go. But it’s really hard because letting her go means also letting go of some of the things that defined me. My identity is changing along with my illness; sometimes that scares me and others times it excites me. The possibility of what could be is a very new feeling and I hope to talk about it in more detail in a later post on identity and chronic illness.

3. Belief: Deep-rooted beliefs about illness.

This was an interesting and surprising theme that popped up during my time on Jamie’s comfy couch, and that’s the beauty of therapy — unearthing those subconscious thoughts and beliefs you had no idea were there. I discovered that being ill and being brave are linked for me, and as I talk to more and more people with chronic illness, I suspect it’s the same for many of them too.

As children, we’re rewarded for being brave when ill or injured. When my children had their vaccinations at the doctor’s, they were given a sticker that said “I was brave,”  and the nurse cooed  “Don’t cry, there’s a brave girl.” If I fell over as a child, my mum would encourage me to “jump up, be brave.” I’ve done exactly the same thing with my kids — a kiss, a magic rub on the bump and on with the day. So, as I’ve grown into adulthood, being brave to me means fighting back those tears and getting on with it. It doesn’t mean staying in bed, canceling plans and letting other people take care of me — that’s not bravery, that’s giving in!

Therapy has let me explore this more and question what bravery actually means when you have CFS/ME. Bravery means putting one foot in front of the other and taking baby steps (literally) when all you want to do is give up. It means saying “no” to that person who wants to visit because you know just talking will drain your energy today and then you’ll be asleep again when the kids come home. It’s about putting yourself first at the risk of losing people who don’t understand.

Now that’s brave, girlfriend! (All three children cringe at Mum’s blatant out-of-date attempt at banter, or should I say bantz?)

So, maybe talking therapy could help you too. There are lots of great therapists out there, but a good place to start is with your GP who can put you in touch with recognized services. Good luck!

Follow this journey on the author’s blog.

Photo by Julie Johnson on Unsplash

Originally published: May 6, 2019
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