DOCTOR WITH LONG COVID: "This is not psycho stuff"
Slowed down by Long Covid: A popular medical influencer experiences hell and the maximum punishment of doctors: disregard.
Ms. Grams, you have suspended your health podcast for an unforeseeable time because of Long Covid. You have to conduct the interview lying down, tremble when you take a glass in your hand, have shortness of breath. Is it as bad as it looks?
I had to record the four-minute podcast announcement in four stages. The hardest way for me is sitting, I can hardly hold myself upright. I freeze colossally, my muscles tremble with the slightest effort, I can often hardly remember and not concentrate for long. Sometimes I sleep for eleven hours and wake up just as exhausted as I fell asleep.
With your many expertise as a doctor: Is the course typical?
Long Covid has many faces, there is no uniform course. But there are typical patterns. I have experienced in recent weeks what many long Covid patients are experiencing. You are not taken seriously. This is really bad, also because it favors chronication.
Your second infection was more than three months ago. Were you seriously ill?
It was intense. If I hadn't been a doctor, I would probably have had to go to the clinic. I thought to myself: Shit, that's not going well. My body pretended to have never seen the virus before. At first I thought I would do what I always do to get fit again, no sport at first, but every time I went out with the dog, I tried to make a bigger round.
Still, it didn't get any better?
It was like a blockade. My body is paralyzed. I get pain if I do too much. One of my cardinal symptoms is PEM (note of the editor: Post-Exertional Malaise), in which you are completely exhausted after little effort. I usually walk between eight and ten thousand steps, even with ten hours of work a day. Running is my thing, I do yoga, I go hiking. Now I can't get out of bed, and with every little effort my body gets pain everywhere. In the fingers, in the eyes, in the head. As if the brain were hurting. As if the small blood vessels were all blocked.
When did you seek help?
It wasn't until my employer realized that I couldn't work like that I understood myself: I really have to take this seriously, that's Long Covid. I have been on sick leave since then, have started trying off-label drugs, deal with the pacing method, a kind of energy management recommended for Long Covid. But I was getting worse and worse. I then got help from a psychotherapist. She gave me a valuable tip. Imagine, she said, you only have ten spoonfuls of energy every day. You won't get well if you consume twenty or more spoonfuls of energy every day. Fatigue can then become chronic. I just lie there for hours and breathe. It is the maximum stimulus reduction to allow the body to regenerate. This requires a blatant discipline.
Nevertheless, you do not seem depressed at all.
My drive is completely normal. I'm not depressed, on the contrary. We are trying to manage the situation together. My family gave me a plate of ten spoons. It's on the kitchen table, and I put the spoons on it in the morning and then always take them down. So we all see where I'm standing with my energy level. My family takes everything from me, from dogs to washing clothes. My employer also understands the situation and supports me great. Many people affected also have to cope with the blatant lack of understanding about their illness. The spoons also help me to stay emotionally stable, I now have a system.
How did the doctors examine you?
First of all, not at all. I had the feeling that there were three drawers open: Either you are a simulant, actually have nothing at all, just look for attention. Or you are weak. Exhausted from the pandemic, the crises of the world, you have a depression that you don't want to admit. Or thirdly, you are over-zealous in life and simply have a burnout. In any case, it is your own fault. That made me really angry. In which disease do we do this? I go to physiotherapy every week, they take fatigue very seriously. They knew immediately that the most important thing is not to overload me. I was even recommended a reactivation of rehab at the family doctor, which can make everything worse with PEM. That's why I went to a long Covid expert.
What came out of it?
She examined everything, including a lung function test and a hand force measurement, both with very bad values. POTS was diagnosed, a potentially postviral circulatory disorder. Investigations are underway for autoimmune, rheumatological, neurological, pulmonological, vascular and circulatory processes. In part, you find blatant abnormalities. It may be that there is a large psychological component in some patients. But to winged off before you have examined, must not be.
Do the doctors perhaps react in this way because they feel powerless and because there are few recognized therapies?
Some complaints can already be treated symptomatically. And there is also increasing evidence for this. Informed colleagues are not so helpless.
Do the doctors inform themselves too little?
We have known Covid-19 for four years now, we are no longer at the beginning. There is a lot of research on the causes, possible therapies and collegial exchange. But some of it seem to be going past. What is bad, because those affected feel lost, sometimes turn to dubious promises of salvation and expensive humbug, lose good faith in medicine overall. Of course, this is a personal thorn in my side as a doctor.
Are you talking about post-viral syndromes?
We always want to learn from the pandemic. For this, we must be prepared to learn from what we already know historically. From the Spanish flu, from infections with Epstein-Barr viruses or influenza. We know that viruses can sometimes have serious long-term consequences. If we do not do this, there is a danger that we will push many people on the psychological track onto the siding and not get them back into life. Postviral fatigue can become chronic and in the worst case end in complete bedriddenness, need for care, incapacity for work and possibly also in ME/CFS, the chronic fatigue syndrome. This is not psycho stuff.
From your point of view, what does it take to deal with it better?
We need not only vaccination campaigns, but also urgently educational work and further research on the problems after the infection. Contact points for complex postviral phenomena with an interdisciplinary approach would make sense. In the case of cancer, there are the tumor conferences in which the individual patients are looked at together from different disciplines. It is also important to reach people who are so severely affected that they cannot come to an ambulance or practice.
And what's next for you?
I am not attached to the disease and the diagnosis of Long Covid, but I expect my complaints to be taken seriously. Only then can you treat it properly. And when I get rid of fatigue and am fit again, I also like to do an activating rehab.
