A List of Things We're Missing

Compiled by Eva Meijer

Translated from the Dutch by Fannah Palmer

My recently published poetry collection, Variaties op aanwezigheid (Variations on Presence), is based on my experience with long COVID – stylised, sure, but my experience nonetheless. Describing it is important to me, because it allows non-ill people to get a glimpse of living with this illness. I’m a writer, and I consider it my job to write about what I experience. At the same time, I can’t and don’t wish to speak for everyone with PAISs (post-acute infection syndromes). There are people who have been ill for much longer, or have been much more seriously ill than I was, who aren’t facing the lucky prospect of getting better. Their voices are barely heard in political and public debates, partially because of the nature of PAISs – the more you exert yourself, the more ill you become. That’s why I wanted to use this piece to allow others to speak, to provide a cross section of what people in this community are missing.

— Eva Meijer

---

A List of Things We're Missing

— Denise van Schelven (@moonshot.mixed.media)

*

I miss walking through Griftpark on Saturdays with my husband or my son to get our weekly bread at the sourdough bakery and then continue on along the canal towards the market on Vredenburg Square to buy some cheese, herring, nuts and hummus and then pass the flower and plant market on Janskerkhof to buy some fresh flowers or little plants back home to have lunch with all those delicious, freshly purchased foodstuffs. And our cat Soes is there, waiting for her teensy-weensy serving of herring.

— Josine van der Togt

*

I miss going for a run after a quiet day of work and reaching the path near the river, then turning around, wet hair in the back of my neck, breathing rhythmically in the afternoon light.

—       marwin vos

*

What I miss terribly are the fun game nights with friends; without watching the clock!

I also really miss going outside for a full day, there we go, onto the train, and then take a walk somewhere or visit a museum at length.

—        Wilma Hoogendam

*

I miss being able to fulfil my wish of becoming a mother (wouldn’t be wise in my condition).

*

I miss going to school for a whole day and really feeling like I belong with the rest of the class. I miss participating in pe. Running and climbing in gym class. I miss being able to play with my best friend after school.

—        Milou (8 years old)

*

I’m lacking doctors showing me enough respect to add the words ‘as yet’ after saying ‘no explanation’.

*

I miss being able to hold my partner’s hand when we go outside. 

—       Jax Davis

*

I miss having an income of my own.

*

I miss feeling connected to others. Shared experiences decrease in depth and frequency, your social life recedes further and further into the past. You’re trapped, and the colours around you become duller. You’re alone, you feel fragile, short of breath and exhausted. Your status with respect to the outside world diminishes, and you become less involved. The distance to your perception of life grows bigger by the day. It feels like dying slowly.

—      PC

*

What I miss the most is cycling, and especially traveling through Southern Europe with a bicycle and tent. Cycling is my outlet.

—       Iris Boersbroek

*

I’m lacking rehabilitation centres for people with PAISs. I would like to stay in one. So that I don’t have to exceed my own limits for things that simply need to be done (groceries, cooking, etc.). So that I have space to focus on recovery.

*

An experience I missed a lot during my long-COVID period is: not having to think about everything. Feeling free enough to do something ‘spontaneously’, without thinking about the consequences it’ll have for myself and my recovery process.

Instead of constantly having to monitor myself, constantly checking how I’m really doing, in order to protect myself from deteriorating and to eventually get better. Long COVID forced me to develop the concentration and discipline of a first-class athlete, only in order to somewhat keep living.

—       Cor Iacens

*

I’m lacking a guide through the jungle of symptoms and limitations.

*

I miss having casual conversations in the streets.

*

Since being infected with COVID, my life has largely come to a halt. Gradually increasing my working hours kept stagnating. By now I’m 100% unfit to work. I can’t do anything with my family and friends anymore. At least not without triggering PEM (post-exertional malaise) and needing days to recover. We used to do things all the time, and I enjoyed it immensely. Day trips, going out to dinner with family or friends, quizzing the kids on their schoolwork or welcoming guests at home are too much of a burden now. I simply can’t do it anymore without getting PEM. I’m no longer the father, partner and friend I used to be and would like to be.

—       Lars de Jong

*

I’m lacking money.

*

I’m lacking prior research done into this illness before it was pigeon-holed as ‘psychological’ instead of the other way around.

*

I miss ‘normal’ and ‘simply’. I’m ‘simply’ going to do something. Now, everything is measured off or a luxury. To put it briefly: this is it.

*

I miss being under the illusion that life is malleable.

*

I miss feeling like I’m a part of us, of a community, of society. I miss feeling like you’re part of the same thing, together. That feeling, which is almost like keeping a secret together, something that allows us to understand one another. You only feel it once it’s gone. Do I still have the right to speak? I miss the feeling of equality: I matter just as much as you do.

—       Eline

*

What I missed most of all in that time was going to my studio.

And once I could go there, for months I was still too weak to climb the fence and greet the neighbours, which was what I always used to do.

—       Bink van Vollenhoven

*

I’m lacking (temporary) access to care proceeding from the Long-term Care Act, which I don’t qualify for.

*

I miss childcare.

*

I miss breathing in fresh, early-morning air without wearing a face mask, the smell of cantaloupes on display in the supermarket. A stranger in the street points at my mask and yells: COVID is over. The elastic band chafes behind my ears.

—       MM Goosen

*

I’m lacking reimbursement for necessary care.

*

I miss having a vision for the future. A sense of it being only natural that you can develop as a human being (and a professional) in a way that aligns with your dreams and values. And participating in the developments of the people and society around you.

*

I miss the feeling of longboarding across fresh tarmac and processing my anger by skating for long stretches at a time while listening to loud music.

I miss taking forest walks with my family.

I miss those late-night conversations in which people open up more and you get to know each other even better. Now, I leave parties right after dinner.

I miss being able to make an entire watercolour drawing in a single session.

I miss being able to take care of others. Even just doing household chores, so that my boyfriend and parents don’t have to take care of everything.

I’m lacking a pet (a little rabbit) that I’ve wanted my whole life but I can’t handle the sounds and the care for it.

I miss wandering through shops in the city.

I miss having multiple friends over at once.

I miss being able to eat anything without getting a stomach and a back ache from it.

I miss being able to use my brain for more than an hour at a time to talk, draw, learn new things and drive a car (I can only drive one way, never the way back, so I never drive anymore).

I miss the feeling of fulfilment after running, swimming or exercising.

I miss my nervous system responding normally to the cold, heat and loud noises.

I miss going on dates with my boyfriend outside the house.

I miss being able to just declutter and clean the house.

I miss finding a recipe, doing the shopping by myself and cooking right away.

I miss cooking together with my younger brother or my friends and then eating together and having long conversations afterwards.

—       Laure Wiggers

*

*

I miss being able to get vaccinated, take medication, eat and drink without any problems/lingering residual symptoms. What helps with one thing, harms another.

*

I miss having a pain-free body that doesn’t feel heavy and sluggish all the time.

*

What I miss like crazy is connecting with my partner. Intimacy, even having an intimate conversation, exhausts me very quickly. I miss it like crazy. When our children were with our exes, we used to stay in bed for hours. We caressed each other. Cherished each other with a capital letter. Every little spot was loved. We were playful, exploring. We enjoyed fulfilling each other’s fantasies.

            Now, that part of my life has shrivelled up too. Our conversations are more superficial. There is less of a connection when we have sex and it doesn’t last long.

—       Mika

*

—      Karin Gradussen

*

(Looking back on it) I missed having someone to help me take care of my small children and the household. My children have suffered from having a disabled mother (and an unwilling father).

*

The word I’m thinking of is ‘Loneliness’. I’ve been ill for 2 years and 9 months now. In the beginning, people are concerned about you, but they are so less and less. Family, friends, colleagues. Everyone goes on with their lives. For me, my life was/is literally at a standstill. The person I used to be no longer exists. It can be quite lonely sometimes.

—       S. Heslinga

*

I’m lacking some general tools to help me find a balance between not trying too hard to feel better, and still taking care of your body as best you can.

*

I miss bread, butter, jam, ham, milk, cheese, coffee, tea, biscuits, pie, candy, pastries, chocolate, ice cream, fruit, brown rice, couscous, salads, tomatoes, potatoes, gravy, sauces, soup, vegetables.

*

I miss not having to wear a mask when I’m around other people.

*

I’m lacking harmony between what my mind wants and what my body is capable of.

*

I miss being able to make good time, to ‘quickly’ do something.

*

I miss driving my little car (Suzuki Suzanne) through the Netherlands.

—       Lisa Staadegaard

*

I miss being able to do fun things with my children, and to be the mother I would have loved to be for my two young children.

* 

Vista

— Leonoor van Aubel

*

I’m lacking facilities that are tailored to my limitations, such as available resting spaces where you can lie down in cities/museums/trains/clinics/restaurants and so on.

*

I miss being carefree, simply doing things, without constantly wondering if and how you’ll be able to keep going.

*

I’m lacking acceptance/understanding from certain close family members and friends.

*

I’m lacking contact. A lot of ‘friends’ are no longer there. When you can’t join them anymore (on walks, weekend trips, to the cinema and so on), they stop inviting you at some point. It’s tough, but understandable (?). The best ones stayed, but I don’t see or talk to them often. I don’t want home visits, those exceed my limits (they don’t live nearby), sometimes I manage to meet up, but setting a date beforehand, which is essential to their calendars, doesn’t agree with my need to be able to cancel last-minute. Long phone calls are reserved for my children, because that costs me a lot, too.

*

What I’m lacking:

-       One single name for the post-virus syndrome

-       Recognition: everyone knows about long COVID, but almost nobody’s heard of CFS, even though it concerns many people

-       Acknowledgement: I’ve had 35 years of living with a feeling instilled in me by others (including doctors), that it was ‘all in my head’. All because they couldn’t find what was causing my symptoms. I’m still largely afraid to talk about it.

-       What I miss most of all: a normal life, free of abnormal exhaustion, feeling fit again, being able to act on all the fun plans I have in mind. In short, a solution!

—       Thea

*

I miss being able to take a walk longer than 2 kilometres, and to go on a worry-free day trip. And to sensibly decide to have a second child and being able to care for my son, who is almost 2, for a whole day without any physical repercussions.

*

I miss being able to concentrate, which makes it impossible to read a book, and I can only ever process a tiny bit of information (visiting my notary today, will probably start sounding like Chinese after a few minutes).

*

I’m lacking visibility. Pretending to be better than you are, people can’t tell a thing by looking at you while you’re falling apart on the inside… That sort of thing.

And I miss the triathlon.

—       Sanne

*

I miss being affiliated with clubs. A lot of what’s being organized takes place too late, usually in the evening, and lasts too long.

*

What I miss a lot is the ability to be a part of society. There are not a lot of bright spots.

—       Wendy van Oenen

*

I’m lacking care because no one in the medical world is at all interested in illnesses like ME, chronic Q fever, Chronic Lyme disease and mono (PAISs).

—       Lisa Tubben

*

I miss being able to help my loved ones with things they need me for.

*

I miss going to church.

*

I miss attending important events, such as weddings and funerals.

*

I miss being self-reliant.

*

I miss listening to my little nephew’s constant chattering.

—       Corine Troost

*

I miss spontaneously meeting up with my son or some friends, drinking a glass of mulled wine in the city for Christmas.

—       Verder met Postcovid (Getting on with Post-COVID)

*

I miss being lucky enough to have a partner.

*

I miss calm.

—       Karlijn Wijten

*

I’m lacking recognition from the employee insurance agency.

*

I miss ‘normal life’. Even though I can still do plenty of things (in small doses), this big bad illness is constantly hanging over me like the sword of Damocles, because talking/biking/reading for too long today means having a gigantic hangover tomorrow (and some days after).

—       Lara Polak

*

I’m lacking the tools to make the illness more visible for other people, and to better communicate it to others.

*

What I miss most is my spontaneity. Acting spontaneously. Being able to think, talk, move, enjoy things spontaneously. Everything needs to be dosed and measured. I can no longer spontaneously surrender to my natural intensity. My spontaneity is the thing I miss most of all.

—       Sanne

*

For me, the main thing is the lack of social contact. Social exclusion is a constant in my life, due to the restrictions of the illness itself, but also due to the way I have been, and often still am, treated. I did not choose the ways in which I’m restricted, but I am being reviled for them, in informal settings as well as in formal ones (by employers, the government/politics, doctors).

—       Admin of the ME/CFS sufferers’ community on WhatsApp

*

I miss simply being able to dance again!

*

I miss my language

—       Truus Matti

---

A List of Things We're Missing.pdf

Download PDF • 1.57MB

Note on the text

People with long COVID, ME and other PAISs contributed to this list. I’m very grateful to everyone who has submitted something. I would like to thank the patients’ associations Long Covid Nederland and PostCovid NL for sharing the call for submissions. I would also like to extend a warm thank you to the admin of the ME/CFS sufferers’ community on WhatsApp for compiling experiences of lack. Many of the anonymous submissions came from this group. The remaining anonymous submissions were sent to me personally. As such, each name is known either by me or by the admin of the ME/CFS sufferers’ community on WhatsApp.