ME/CFS sufferers must constantly prove that their illness is “real”

New study shows: ME/CFS patients feel under pressure to prove that their illness is real

When your body goes on strike, your strength fails and even the simplest everyday tasks become impossible – but those around you can't see anything wrong with you. Instead of sympathy, you are met with skepticism everywhere you turn.

Then, of course, you start to ask yourself: Maybe it's 'just psychological' after all. Am I just imagining my exhaustion? Maybe it's 'just psychological' after all. Maybe you should just pull yourself together? Should you follow the advice and just “exercise a little more every day”?

It is precisely this spiral of physical suffering and lack of recognition that has accompanied people with ME/CFS for many years – and, since the pandemic, many with Long Covid as well. A new study by the University of Surrey now makes it clear that the emotional strain caused by disbelief, pressure to justify oneself, and medical uncertainty is enormous.

Saara Petker, clinical psychologist, co-author of the study, and former doctoral student at the University of Surrey, writes:

"We found that our participants live in constant uncertainty and struggle to find treatment. They told us that they don't feel heard, and some said that all these experiences have caused them to lose trust in doctors, their social environment, and even their own bodies.

Medical advice is important—but psychological support must be offered with caution. If it is seen as a substitute for medical help, it can be off-putting."

This means that if my doctor sends me straight to a psychologist before seriously examining my physical symptoms, before even seriously addressing the issue of ME/CFS, then this creates exactly the feeling that many ME/CFS and Long Covid sufferers know so well: that their symptoms are not “real,” but imagined, exaggerated, or even self-induced.
What is intended as an offer of help quickly comes across as an unspoken judgment: “There's nothing wrong with you. It's all in your head. You're being hysterical. It's probably your hormones.”

There is a world of difference between receiving psychological support as a supplement and it being the only ‘answer’ to a serious physical illness.
Especially in the case of chronic invisible illnesses such as ME/CFS or Long Covid, it is essential that medical help is not replaced by psychological support, but rather supplemented by it.

Only then can those affected feel safe – and not like suspects in their own bodies.

A central theme among many study participants was the fear that psychological support would be interpreted as an indication that the symptoms were “just imagined.” This concern means that many patients do not seek urgently needed help for fear of not being taken seriously again.

“The problem is not that patients reject psychological help – they long to be taken seriously. But when medical help is replaced by psychological services, this can be perceived as devaluing.”

– Prof. Jane Ogden, health psychologist

ME/CFS is a disease that usually remains invisible.

Die Symptome – extreme Erschöpfung, Schmerzen, Brainfog, Kreislaufprobleme – sind oft schwer objektiv messbar. Und genau das macht es so schwer, Verständnis und Unterstützung zu bekommen.

The symptoms—extreme exhaustion, pain, brain fog, circulatory problems—are often difficult to measure objectively. And that is precisely what makes it so difficult to gain understanding and support. In a world where “visibly ill” is often equated with “really ill,” ME/CFS sufferers face a double burden: Not only do they struggle with a devastating condition, but they also have to constantly explain, justify, and prove themselves.

So what can family members, doctors, and fellow human beings do?
Sometimes it's very simple – and at the same time enormously effective:

Listen and believe

Take the reports of those affected seriously – even (and especially) if you cannot see the symptoms.
You don't need medical expertise to show empathy. An honest “I believe you” can heal more than many therapy suggestions. And it can prevent what many patients describe as the most painful thing: the feeling of being alone with everything, of constantly having to justify and prove themselves.

Combine medical and psychological help

Psychological support should be offered in addition to medical treatment – not as a substitute.

Promote education

The more people know about ME/CFS and Long Covid, the greater the understanding and support.

It is time that we as a society learn to see the invisible and treat those affected with empathy and respect. This does not require medical training, just a little compassion.

And even if you have no idea about the illness, you can admit this openly and say:
“That sounds really awful, what you're describing. I believe you. What can I do to support you?”

Quelle: University of Surrey – Studie über Long Covid und das Gefühl, die Krankheit beweisen zu müssen