Recovery vs living with symptoms

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The messages we get from most sources, including the NHS and charities, focus on living with our symptoms, instead of recovery.

This is understandable. There seems to be no consensus on what ME/CFS is or is caused by, with a lack of research and evidence around treatments, inadequate resources and plenty of scepticism that it even exists.

Given that starting point, it’s no wonder that many people don’t recover. That poor record also becomes self fulfilling; if it’s very unlikely that people will recover, it’s better to focus on helping them live with the condition instead of giving false hope.

If you’ve lived with your condition for years, or even decades, likely while struggling to get a diagnosis or even basic recognition, the idea of recovery is such a pipe dream that it’s better to focus on making it through the day.

I fully support anyone who aims to live with their symptoms. This illness has a way of beating you down and hope can become too painful when it gets repeatedly dashed. There are also many practical reasons to focus on managing symptoms, not least if you have dependents.

That said, I believe recovery is possible and my aim is to recover fully, not just live with my symptoms. In fact, thousands of people have already recovered.

It’s easy to forget that so many people have recovered. That’s partly because of the many heartbreaking stories of people living with the condition, and partly because the people who have recovered are now mostly just living their lives, off the radar of the main medical and charity groups.

These positive recovery stories need to be uncovered. I’d recommend the book Recovery from CFS: 50 Personal Stories compiled by Alexandra Barton. The Optimum Health Clinic also has some good video stories, such as David’s and Marie’s, amongst many others online.

These recovery stories show the many ways that ME/CFS can manifest and the corresponding range of recovery methods. They are full of great ideas to try and also show that even people who have been ill for decades can recover fully, when they find the right method for them.

I find there’s value in knowing that those stories are there, even if I don’t read or listen to them often.

To keep these positive stories at the forefront, we need to be selective with the type of story we read. It’s essential that there is space for the stories of people suffering, and by making our voices heard we can bring about change. But it’s also essential to have positive stories around you that support your recovery journey and narrative.

Focusing on recovery is a mindset. It’s about indentifying as a healthy person and thereby taking action to get back to health, instead of identifying as having a chronic illness that can’t be changed.

It also helps hugely to have someone external who tells us that we can recover. I realised recently that my nutritionist, who I’ve worked with for almost 2 years, is the only professional person who says this to me, which I really value.

If you don’t have anyone who is telling you that you can recover, then now you do: me. I know that you can and will recover. Let’s do so together.