Severe ME/CFS Awareness Day

Post by Doc Jay

Six years ago I would not have been able to write this post.

I was in bed with severe ME/CFS, Bell 10.

What is often not visible to the outside world is a daily reality for those severely affected.

For over 20 years, I had treated thousands of patients as a doctor. I thought I understood the human body well. And then suddenly I was on the other side myself.

I've experienced how radically this illness can slow the body down. How life shrinks to just a few square meters. How everyday things suddenly become enormous challenges. And how painful it is when you feel that others can't truly understand what you're going through.

🦋 August 8th is World Severe ME/CFS Awareness Day. 🦋

For me, this day is an opportunity to raise awareness of ME/CFS. Above all, I am thinking today of the people who live with this serious illness.

To those who can barely leave their beds and have to lie in darkened rooms. To their loved ones. And to all those who try anew each day to reclaim a piece of their lives.

ME/CFS never only affects those who are ill. Often, the illness changes the lives of entire families.

My own illness has changed me.

Not just as a person. Also as a doctor.

My own experience and the knowledge I have gained since then have fundamentally changed my view of chronic symptoms.

My medical history has given rise to a new task.

Today I am able to pass on my knowledge and experience, accompany people and convey to them that they are not alone in their situation.

My aim is to offer realistic hope – without downplaying the severity of the illness.

If I could wish for something today, it would be this:

• That every person with ME/CFS is taken seriously.

• That those affected receive support.

• And that no one has to justify their symptoms or be left alone with them.

Because that's exactly what I would have wanted for myself back then. 💙