ME/CFS & social withdrawal: a vicious circle

Dr. Martina Melzer, published: 04/14/24

Last weekend I had a visit from two friends I used to study with. I haven't seen them for years. The children of one friend are 10 and 14 and I saw them for the first time. Tears of joy and gratitude rolled down my cheeks. It is now possible to have social contact again. Like a "normal" person. But after the emotional farewell in the evening, I lay flat. It started at night. Fever, vomiting, severe stomach cramps after every meal, disturbed digestion, total weakness and exhaustion, severe headaches and aching limbs.

It must have been the chicken and potato salad from the night before, I thought to myself. This is clearly a food-borne infection. A severe gastrointestinal infection. After three unspeakable days, the worst was over, but the fatigue and weakness persisted for a few more days. All sorts of things went through my head. A crash? Do I still have ME/CFS? Was it all too much? Had I overdone it? Or had a gallstone started to move? I had eaten quite a lot of fatty and sugary foods on all those trips. Or was it the cream cake? I've been avoiding dairy products for years because it helped my gut in the worst ME/CFS times and now there are other reasons. But as one café only served cream cakes, I made an exception.

In the days that followed, the whole thing turned into full-blown gastritis with severe heartburn, belching and stomach pain. At the same time, I felt immense anger inside me and a flood of sadness kept coming to the surface. What was going on? And was everything somehow connected? The way I always explain it to other people? Time for a little self-inspection.

Yesterday and today I realized that last weekend was wonderful. I felt connectedness, pride, joy, gratitude. All signs that my brain and nervous system were in a healthy state. At the same time, however, it was probably bubbling deeper inside me, deeper in my brain and nervous system. Anger and sadness were working away. And I suppressed them. I'm really good at that. Because I learned that as a child. I had to learn it. And although I am now really well versed in the subject and have learned to feel and express these emotions, sometimes it catches up with me again. And this time it's probably as thick as a fist.

Subconsciously and above all physically, I have been processing and releasing a lot of anger and sadness this week. Now, a week later, the whole thing has finally reached my conscious mind and I can process and integrate it rationally.

Last weekend showed me that I felt like I had lost half my life to this damn illness (or rather the complex of various syndromes). I had to withdraw more and more, isolate myself socially. It wasn't because I wanted to. It was because I had to. Brain fog, pain and fatigue force a person to withdraw. They render them incapable of acting, they can no longer function, they simply can't, even if they want to. This naturally leads to anger and sadness, as well as feelings of shame and guilt. You feel useless, worthless. You see yourself as a burden. What kind of life is that?

And then there's the reaction of other people. If you're lucky, there's at least one person, maybe even a few, who won't turn their backs on you. Even if - from their point of view - you turn away from them. Who care, who offer help, who try to understand you. Who show compassion, love and empathy and give you a feeling of connection. Despite all the horror.

But there is also the other side. People who turn away. Who don't understand you. For whom you become uninteresting because they can no longer have fun with you, because you no longer work, are no longer useful. People who think to themselves: I have enough problems of my own and too much on my plate, I can't take care of him or her too. Or who think that he or she has changed completely, is mentally ill, I'd rather distance myself from them, it's too much for me, I can't cope with it. Or who are so busy with their own lives that the formerly agile and now ill person simply disappears from view. Out of sight, out of mind. And so you not only inevitably isolate yourself, but you also become isolated from others. A damned unpleasant cycle that fuels further anger, sadness, shame and guilt - and social isolation.

The natural ways of the brain and autonomic nervous system to secrete themselves in unfavorable living conditions, in case of danger, after an injury or infection, and thus ensure survival, are not helpful in the long term. It´s the contrary. We are social beings, like all mammals. We need each other. We need connection, good and secure bonds with other people. In order to get out of this social withdrawal that accompanies people with chronic fatigue, chronic pain and depression, they have to free themselves from this forced isolation. The best way to do this is to talk about it with the people around you! Explain how you feel to the people who don't turn away from you. How bad it is for you. That you're not doing this on purpose. That you desperately want to function normally again, that you love the others, that you need their help. That you are doing everything in your power to get out of it. The more people understand, the more understanding they have.

During this process of "isolation" and subsequent "resocialization", it will also happen that people disappear from your life or no longer belong to the narrow core, but move to the "periphery". That hurts. But that's okay. And maybe even healing - as in my case. Focus on the people who stay with you and who are good for you, who make you feel safe. Let them help you, connect with them. And reassure your brain and nervous system that withdrawal is no longer necessary, but that it is safe to reconnect. There is probably nothing that will heal you faster than allowing yourself to do this and practicing it.

Back to me and my weekend. I don't know whether it was the food, the emotions or the unaccustomed exertion that caused the discomfort. But I assume that it was a mixture of everything. Everything in the body is connected to everything else (= psychoneuroendocrinoimmunology). In any case, it helped me a lot and helped me to heal a little further that I worked through last weekend on a physical (with TRE), emotional (allowing and expressing) and mental level (questioning and analyzing). I was very happy and touched by the visit. But it also shook me up a lot.

Translated with the helpf of a translation program

Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. Please talk to your doctor or therapist before making any decisions about your physical or mental health. Every way into a mind-body syndrome is something individual, and every way out.