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 struggle 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 definitely very worried and scared. We have no idea how or when the corona pandemic will end. I’m worried for the safety of my loved ones. I’m worried for myself. What will happen if my friends will no longer be able to take care of me anymore? On top of that, I’m in the worst state of my illness. If I were to get infected it could potentially hit me very hard.

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. 

Shifting.

With the coronavirus, things have been somewhat different though. Patients who have had trouble arranging an email or phone consultation with their doctors are now suddenly offered a service that previously was apparently impossible to organize. Interesting though as, time-wise could telemedicine actually be a lot more effective for both the patient and the practitioner?

It’s sadly not uncommon for parents of children with M.E. to be threatened by social services. Children are removed from their homes and little to no effort has been made to provide any means for virtual homeschooling. With (virtual) homeschooling now being the only viable option, would it be possible to provide this to patients with M.E. as well? Especially after the crisis is over? 

We see organisations and the general public offering their services to people affected by the coronavirus. These include their carers or to the elderly and people like me with a chronic illness. I have also had quite a few people expressing to me how hard it is on them to not be able to go out and lead their lives as they normally would. How difficult then, one can imagine my life must be in this completely bedridden and isolated state.

Leveling.

On the other hand, as a person who became (severely) ill after a viral infection and lost about everything I could lose, I could also be bitter about the fact that after 13 lost years of struggling, being disbelieved, I still am not receiving the adequate care that I need. We’ve only seen these recent changes emerge due to a virus unrelated to my own disease. To some degree, I am angered, because why has this debilitating disease with about 17 million patients worldwide been ignored and ridiculed for decades on end? 

However in a blog about M. E. by professor emeritus in psychology, James Coyne, he describes the relationship between the illusion of being able bodied forever and the limits of empathy. That even as a professional, for him being an able bodied person, it’s impossible to really fully grasp what an illness or disability can do to you. You can have a certain notion of what it’s like, but it really takes experiencing it before you really understand. It’s of course also why patient support groups can be of the utmost importance to help you cope with the turmoils of a disease. 

There are quite a few infections that have caused post infectious symptoms. For example SARS. 87% of SARS patients did not fully recover. 17% couldn’t even work because of M.E. like symptoms. However, the infections itself have often been restricted to a select group of people, even if some were actually part of a pandemic. With the coronavirus however, many countries throughout the world are in some way or another in a lockdown situation. Not everyone might be as aware of the gravity of the situation, but everyone has or will now experience what it’s like to have your whole life altered by a potentially life threatening or deadly infection. 

We now suddenly all have a common enemy that, if you will, has created a bridge between all people of all colours of the rainbow, not to mention social and economic statuses, including the scientific and medical world. Until now, it has been extremely controversial that patients with a disease like M.E. remain ill after an infection. There has been very little cooperation between the mainstream medical world and the patient community as a whole. The patient experience has often been dismissed, and flawed science from psychiatry based on “unexplained chronic fatigue” has been in control of the narrative. As we are already in a paradigm shift with this disease, the crisis with the coronavirus might open a few more extra doors that have remained closed for us. I feel there is a unique opportunity for us to progress. So instead of feeling angry I’m actually carefully optimistic.

Healing.

The coronavirus is considered a zoonotic disease. We humans have been cruel to this world and the animal kingdom alike. We as species have only been expanding our habitat and they are cramped in only a fraction of what they should have access to. This is what has allowed animal microbes such as the coronavirus to cross over into human bodies, causing epidemics. It has been a real struggle to get the entire political world to really take drastic measures to fight climate change. Mother nature however might have just lost her patience. As we are now in isolation, it’s therefore just amazing to see that nature can heal itself when we are forced to back off. The earth is finally breathing again . 

As people aren’t too busy running around and are working from home, this leaves more time to connect with one another, even if it’s on virtual platforms. There seems to be more appreciation for what we have and what we were able to do. 

Now I’m hoping we nip this virus in the bud as soon as possible. That we won’t see anyone suffering like we now see happening at intensive cares in numerous hospitals around the world. It’s just heartbreaking to see the increased number of messages on social media of people who have lost their loved ones due to this disease. I’m hoping there will soon be an effective treatment and/or a vaccine against this virus and that we can all start to resume our lives again. That at least the able-bodied won’t have to resort to self isolation anymore and that the severe corona patients won’t be left with lingering symptoms that can debilitate them for life. 

There is no denying though, that I very much hope that this very difficult experience will somehow aid people with a disability or a chronic illness as well. That it will drive a more fundamental and long overdue change. That there will be more understanding for what it’s like to be an involuntarily recluse, to be ill and isolated. To have an understanding of what it’s like to lose one’s life to something that is outside of your control. 

While I have no clue as to what long-lasting effects the corona crisis will have on our healthcare system, the economy, our lifestyles and more, it might force us to reconsider who we are and furthermore, those and also what we value. 

As we’ve seen in the last couple of weeks, there are however many examples of people who are finding new ways to support each other in the face of adversity. This provides hope that we can overcome all these challenges. While many might feel this crisis has led to more isolation, perhaps it will also make us appreciate the (human) contact that matters. Maybe the forced social distancing has actually led towards us socially reconnecting. Again, I’m carefully optimistic! 

Please be safe! Please stay home! 

Anil. 🤘❤️

Editor: Russel Mohan

Anil van der Zee