Trial By Error: Thoughts on Self-Isolation from Anil van der Zee

By David Tuller, DrPH

My sweet friend Anil van der Zee lives in Amsterdam–more accurately, he lives on his bed in an apartment somewhere in Amsterdam. Like too many, he’s had a lot of experience at self-isolating.

Below is part of the blog he posted a few days ago.

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The Distant Corona Connection

Adjusting.
We are in a crisis! A pandemic! The coronavirus is spreading. It’s frightening. Will I be infected? My friends? And most importantly how will it affect us? The uncertainty of the unknown is probably the most unsettling of the whole situation. As we are dealing with a new virus there aren’t any effective treatments or cures. The only treatment the medical world has to offer at this point are ways to try to ease the potentially devastating symptoms and support the immune system as much as possible in the hopes that the patient will get the best chance of recovery. Sadly we now know that not everyone will.

According to the Netherlands National Institute for Public Health and the Environment about 80% of the population will experience mild to moderate symptoms. Older persons and persons with pre-existing medical conditions appear to develop serious illnesses more often than others. The advice is to keep your distance, self isolate. Social distancing to stop the virus from spreading or at least to buy us more time to find those effective treatments that we so desperately need.

Schools, bars and restaurants are closed. Streets are empty. People are working from home. The world seems upside down with the coronavirus tearing our lives and our daily routines apart.

How do you go about being stuck at home? Not being able to see your friends and family? The isolation? The struggl to adjust are real!

Routines.

For me, not much has changed since these drastic measures. I have been myself suffering from a chronic illness for about 13 years now. In 2007, I contracted a cytomegaloviral infection. I immediately had to stop my professional dancing career and from then on it all slowly went down hill.

A few years later, I was eventually diagnosed with Myalgic Encephalomyelitis (M.E.). M.E. is a neuroimmune disease that, contrary to common misconceptions, is not characterised by chronic fatigue, but rather by a severe exacerbation of symptoms which manifest after a minor physical or mental exertion. This hallmark symptom characteristic of M.E., often referred to as post-exertional malaise (PEM), can persist for days, weeks or consequently be a trigger for a relapse or permanent deterioration.

For the first six years I could still do things a bit, however during the last 7 years I’ve been at home in a chiefly bedridden state. I therefore now live in a darkened sound isolated room with earplugs, construction workers headphones and when needed, additional sunglasses. Any physical, cognitive or mental overexertion can make me more ill.

As the autonomic nervous system and thus, the blood flow are affected in this disease. I’m not able to be upright for more than a minute per day. I also have a hard time processing things around me. There is simply not enough blood and oxygen reaching my brain. This has resulted in the fact that since 2016 I can’t really watch videos. So no movies, series, YouTube or my beloved tennis matches. I can’t really listen to music or listen to someone talk. That also means no phone calls or Skype.

Reading and writing is a struggle. Often reading or responding to messages that my friends have sent via WhatsApp is impossible. Sometimes for months! This is also the first blog I have written since 2018.

Isolation.

The hardest part of this all is the social isolation. Just having someone walk in the room without saying a word and leave can give me a big old PEM crash for days. My friends therefore quickly drop off the groceries without seeing me and leave. Although I always have enjoyed a dynamic social life with plenty of friends, I now rarely have any visitors.

In 2016 for example I had one doctor come over in November, but my first official visitor in the form of a friend was on the 30th of December. In 2017 I had a rather “good” year because of a drug that stimulated my blood flow which resulted in five visitors. 2018 and 2019 combined I had two in total. A life forced in isolation. A prison of social distancing for about 7 years and counting.

I have a cat who keeps me busy and to save me from going completely bonkers, but for the rest I’m locked away from the rest of the world. Something of a “modern-day leper—without the leper colony“. Recently a friend wondered if I still lived in the same city as him. I was shocked how I’m apparently not part of many of my friends’ daily lives anymore or even just in their daily thoughts.

I’ve missed so many birthdays and marriages; children that have been born and loved ones whom I have lost. I can’t participate in any of it. Life and love are slipping through my fingers. It’s both heartbreaking and demoralizing.

Due to the coronavirus, the rest of the world suddenly has to join in with what many people with a chronic illness have been dealing with for years. The adjustments of the isolation aren’t easy. Not being able to do your job, run your business, care for loved ones, shopping, and attend social events that are canceled are all part of it. Furthermore, the economy might potentially, completely spiral out of control. Everything has changed. The coronavirus is maybe one of this century’s greatest challenges. On social media people understandably so express their dismay about their lives as it is today.

Unpredictability.

M.E. has had its share of controversy. As with many diseases, like for example multiple sclerosis, psychiatry has had a blast with the disease in falsely claiming that you can cure M.E. with psychotherapy and exercise.

A review written by professor Anthony Komaroff from Harvard in the Journal of the American Medical Association (JAMA) shows that through biomedical research it is clear that this disease is not a fabration of the mind. Because of a lack of funding and honestly a lack of interest in the disease, the exact etiology and pathophysiology are still unknown. Luckily the times are changing but patients to date are often still disbelieved that they are actually suffering from a disease at all. It’s not uncommon for patients to not receive the basic care they so desperately need.

There aren’t any US Food and Drug Administration–approved treatments or a cure. My situation could worsen at any time, without any effective treatments and medical professionals who haven’t been trained and educated to deal with this devastating disease. The unpredictability of the situation in these already uncertain times caused by the disease leads to a more profound traumatic experience that goes well beyond the experience of the disease itself.

I’m forever grateful that I have two dear friends that help me on a regular basis. I wouldn’t be able to survive without them. They are my heroes! For many patients however their family and friends distance themselves from them completely. They don’t receive any help at all!. The isolation, the forced social distancing and desperation can get so severe that the suicides rates in this disease are sadly rather high.

Read the rest at this link.

Comments on this entry are closed.

  • Jen 3 April 2020, 5:32 pm

    yes – 100% yes

  • Helen Donovan 3 April 2020, 7:34 pm

    Dear Anil
    Reading your story is very sad
    Unfortunately I have a son who is in much the same state of health as you and I am his primary carer (mum)
    Please don’t give up your fight for life , be assured you will be in my thoughts
    Kind regards
    Helen

  • Julie 4 April 2020, 6:52 am

    It must have taken so much to write this blog, the least i could do is respond.
    You are incredible to me (i have mild/moderate m.e) so i have an understanding of the struggle.
    Your words are powerful & mean a lot.
    Thank you for the window into your world.
    Sending love and hoping you will have brighter days.