Kirsty lives in the UK and has had ME for 30 years or so. She writes about ‘hope’ – whether it helps, how it can be misused, and what ‘real’ hope means to her.
How long have you been ill? Has how it affects you changed much over time?
I’ve been ill since 1995. I had flu, then Coxsackie (Bornholms), then numerous chest infections and tonsillitis. I had ME for a decade. At my worst I was mild to moderate. I didn’t complete my MSc and was unable to work. Evening classes were manageable, but I had to rest aggressively before and after. Sometimes I had to miss them as I wasn’t well enough.
I worked hard at pacing and rehabilitation but something had shifted after I contracted chickenpox. I was very sick for around a week but I felt different afterwards. My immune system had been affected as, at around 30 years old, I had suddenly developed hayfever, but otherwise I felt stronger and could do a bit more. It took several years to reach the point where I thought I had recovered. I then led a normal life and worked, travelled and had a family, but I always had to be mindful that when I was tired my battery was flat and I had to rest. When I got sick with a cold it took me longer than everyone else to recover.
In hindsight I hadn’t recovered, it was still there in the background.
In 2018 I contracted Lyme disease and was subsequently diagnosed with ME afterwards. This relapse is significantly worse than before and I have continued to decline over the last 7 years and am now bedbound and dependent on my family as carers.
How long did it take to get diagnosed and what was that like?
I wasn’t diagnosed for around seven months, I saw Esther Rantzen’s daughter on tv and said to my GP it sounded a lot like what I had. He said it was but he didn’t see any point in labelling it as it won’t change anything. I’d previously been sent for x rays and other diagnostics to rule out cancer etc, so I would have liked to have known sooner instead of wondering if I was sick with something that could end my life.
The second time I was diagnosed much quicker. This time the Infectious Disease doctors were keen to discharge me back to my GP’s care. Took around four months.
Many people assume that ‘hope’ is crucial for coping with a long illness – and they usually mean ‘hope of recovery’. Is that how you feel?
It’s good to have hope that things could change and improve, because there isn’t a lot of incentive to battle on every day in pain just existing and feeling like a burden on people. I think that being told that you will recover in time is misleading and sets you up for a big fall psychologically when it doesn’t happen. I lived this way for around three years in the 90s. It’s also not factually correct. A lucky 20% of those diagnosed with ME recover within 1-2 years, there’s a high probability they don’t have the same sort of ME as the remaining 80%.
Did ‘giving up hope’ feel negative or positive or mixed/changing over time and circumstances?
I haven’t given up hope per se. I still hope I may improve and have a better quality of life. However, I accept I won’t recover to my former life. ‘Acceptance’ is a better way of putting it. I made my peace with it, probably because I had been ill before and acceptance played a part in me no longer being at war with my body and fighting against what it was telling me to do, which was rest. I feel acceptance is a positive step. It is empowering as it enables you to take charge, make decisions and equip yourself for where you are now.
Before I was told I wouldn’t recover I didn’t buy a mobility scooter, why would I? I wouldn’t need it in a few months because anytime now I was going to start to recover. All the disability equipment I have got has enriched my life.
Has this impacted those around you as well?
In the 90s I didn’t give up hope. I always believed I would get better as I didn’t know as much about ME as I do now. Everyone around me believed I would get better if I did the “right things”. There was a lot of toxic positivity.
Hope can be a double edged sword and can prevent you from facing reality and planning realistically. Have you been discouraged or prevented from facing reality of your illness? How did this impact you?
Yes, I’ve been discouraged from buying disability equipment repeatedly. My only regret was delaying the purchases while I struggled on or missed out on life.
Did other kinds of ‘hope’ come to the fore after you abandoned unrealistic hope?
A few times I made plans to go away or attend a concert a long way into the future. I hoped I may have improved by then, but it never happened. I was crushed when I had to cancel the plans. When I stopped making plans it got a lot easier. Now every day is the same but I can manage that.
I have hope now that I may improve so that I can leave the house again and enjoy the company of friends and family sometimes. But there are no timescales attached to that. I treat it much the same as a wistful, ‘when I retire I may live by the sea’ sort of thing.
If you’ve ever had counselling or other therapy, has hope been something that you and your therapist dealt with?
I had CBT (Cognitive Behaviour Therapy, previously recommended by NICE guidelines – withdrawn after a review of evidence). They told me I was an ‘all or nothing person’ and would recover if I broke up tasks and did them less well. It didn’t help at all even though I did everything they said.
When I was a student and first was sick I had counselling. I couldn’t understand what they wanted from me. Even though I attended all the sessions I didn’t feel as if it helped me at all. I was there because I was told it would help, not because I had a burning desire to find an issue and process it.
I don’t think either addressed hope: it was taken as given that I would make a full recovery with time.
What do you think therapists and others supporting people who are chronically ill should understand about ‘hope’?
That it’s hard to focus on hope when you are struggling in the day to day. It’s too abstract and we need the tools to get there. Individuals will be under a lot of pressure from peers at work, family and friends to “keep fighting” and “not give up”… All the usual stuff associated with being a “warrior” etc.
None of this is helpful and it’s counterproductive as battling the condition makes it worse.
Acceptance is key to adapting and living with it. Look at where you are now and hope one day that may improve. In the meantime accept where you are and make each day as good as you can. Invest in disability equipment if appropriate. Appreciate the little things and small wins.
What might have helped you when you were realising the prognosis you likely faced?
Gentle honesty and practical support in recognising which aids may help me. Even now, 30 years on, I am discovering toilet frames and bath chairs. Having peers to talk to about it who understand.
