An article about hidden poverty in the context of the Day of Hidden Poverty.

Seven years ago I suddenly became chronically ill. My life changed completely in one fell swoop. An accident never comes alone, because I could no longer work and ended up on welfare benefit – and that was my biggest disability. Living in poverty is degrading and I wouldn't wish it on my worst enemy! Rescue came completely unexpectedly.

Learning to live with my chronic illness took me longer than contracting it. I was angry with life for a while, but quite soon I adapted to my new reality. Time was ready to look forward again to what is possible, instead of mourning about 'what is no longer'. Learning to live with poverty, however, is a completely different story. I will never get used to that!

Low income, high expenses

The Participation Act has been set up as a temporary safety net for people who are not in paid work for a short period of time. But we all know that the reality is often different: many people with a disability are 'trapped' on welfare benefit for years – sometimes even for life.

“Approximately 50% of people with a disability had difficulty making ends meet in 2020.”

The welfare benefit of the Participation Act is enough for the absolute minimum. This is feasible for a limited period of time, as long as ons has no additional costs. But almost all people with a disability do have additional costs. Such as medical costs (mandatory personal contribution from the health insurance, personal contributions for medicines and practitioners), health care costs (mandatory personal contribution from the CAK, personal contributions for medical aids) and other extra costs (higher travel costs from Regiotaxi and Valys, delivery costs from supermarkets). All these extra personal contributions can add up considerably: the infamous 'accumulation of healthcare costs'. Compensation for these costs does not exist.

Approximately 50% of people with a disability had difficulty making ends meet in 2020. In 30% this was due to high health care costs. More than 60% has cut back on things like clothing, groceries, daytrips and social contacts. More than 90% cut back on several things. More than 40% avoid or postpone health care or support for financial reasons. This had health consequences for almost two-thirds. (Source: Ieder(in), Report 'Stacking of health care costs', August 2021)

Allowances

In order to make ends meet, I have applied for all possible allowances available. I have housing benefit and health care allowance. Municipal and provincial taxes are waived. On paper I can claim an allowance from Special Assistance for my dietary costs, but in practice I am not eligible. I am also not accepted for the Compensation for Disabled Persons of the Institute for Employee Insurance (UWV). The same applies to the municipal “Money Back Scheme” for minimum wages.

“The heating is at 15 degrees, even in winter. And it still wasn't enough.”

I even fail at the Food Bank, because I am allowed to include a maximum of 50 euros for medical costs in the calculation. But my medical costs are many times higher. In my previous municipality I was helped 'on good terms'. Unfortunately this did not work in my new municipality.

Economising

So every month I had a big hole and I had no choice but to cut back a lot. I no longer support charities. All subscriptions I had have been cancelled. I stopped my music lessons. My television and landline have been cancelled. Holidays are no longer possible. The social consequences are great, but it was not yet enough.

So I cut back further. My boiler is set to the lowest possible temperature: 60 degrees. The washing machine and dishwasher only run during off-peak hours. I shower briefly and no more than twice a week. The heating is at 15 degrees, even in winter. And it still wasn't enough.

“I allow myself the 'luxury' of one trip a month (to friends or family), because I don't want to become completely isolated.”

Cutting back more

So I learned to turn every penny three times. I cut my hair myself. I no longer buy clothes, not even when old clothes are worn out. I can no longer afford hobbies. When it's a friend's birthday, I bake something delicious, because a gift is too expensive. I allow myself the 'luxury' of one trip a month (to friends or family), because I don't want to become completely isolated. And then I still don't have enough money left for food.

If your income is so low that you are short of 150 euros every month, you can never save enough. A friend rightly remarked, “Soon you'll have cut back so much that you won't even have geraniums left to sit behind.” That's exactly how it is! I had to give up all my dignity. And every month again I am faced with the choice: do I buy food, do I buy medicines or do I visit my (now 80-year-old) father?

“Slowly poverty also crept into my head and ate away my imagination and creativity.”

Money stress

The daily stress of living in this poverty is unimaginable. If you are continuously concerned with the question of where to get money for food or medicines, then you are forced to live by the day. I don't get around to long-term planning, because every day I am completely absorbed by 'tomorrow'.

Every day I run countless times into things that are no longer possible, because I have no money. Ordinary things – a newspaper, a flower, a cup of coffee on a terrace – turn into a priceless luxury. Poverty creates an unbridgeable social isolation.

Slowly poverty also crept into my head and ate away my imagination and creativity. So I faded a little further every day. Smothered in desperate poverty. This poverty touches me much more deeply than my chronic illness ever could!

This TED talk succinctly explains how poverty works.

“Totally unexpected, my life changed radically again, thanks to a paid assignment”

Turnaround

Totally unexpected, my life changed radically again, thanks to a paid assignment at WijRollen. The editor-in-chief noticed one of my blogs and that led to a freelance job that I never dreamed would exist. This job turned out to be my salvation!

I really didn't expect to be able to hold a paid job with my very limited energy. But under the right circumstances I seem to be able to work quite well. As long as I don't work too many hours, I work mainly from home, and I am able to organise my hours flexibly, I'm fine. At WijRollen it was all possible and I have been doing this job for nine months now. With pleasure!

Liberation

After about six months I had made up my largest (financial) arrears. Slowly the realisation dawned that I am no longer penniless. It took more time before I really dared to trust that. After seven years of living in absolute poverty, it is difficult to let go of that way of survival. Step by step a new world opened up: my 'previous' life.

“Het is schokkend hoeveel makkelijker het leven is als je ‘gewoon’ iets kunt kopen, omdat het nodig is.”

I had forgotten what it felt like to not be short of money! I'd forgotten what it's like to live without the ever-present pressures of chronic money worries. The stress that weighed on my shoulders for seven years has disappeared like melting ice. It's shocking how big the difference is! How much easier life is if you can 'just' buy something, because it is necessary. How much easier life is if you don't have to puzzle every day to save money for food or medicine.

Ik was vergeten hoe het voelde om geen tekort aan geld te hebben! Ik was vergeten hoe het is om te leven zónder die altijd aanwezige druk van chronische geldzorgen. De stress die zeven jaar op mijn schouders drukte, is als smeltend ijs verdwenen. Het is schokkend hoe groot het verschil is! Hoeveel makkelijker het leven is als je ‘gewoon’ iets kunt kopen, omdat het nodig is. Hoeveel lichter het leven is, als je niet elke dag hoeft te puzzelen om geld over te houden voor eten of medicijnen.

Nu ik weer een beetje financiële ruimte heb, ben ik mijn kleding aan het vervangen. Want na zeven jaar heb ik geen overhemd meer zonder slijtplekken of lakens zonder gaten. En als ik nu een keer te ziek ben om te koken, dan haal ik Chinees of bestel ik eten. Een ongekende luxe!

Betere gezondheid

Het voelt als vrijheid om aangeleerde automatismen los te kunnen laten. Ik hoef bijvoorbeeld niet meer alert te zijn op stopcontacten om mijn apparaten onderweg of bij vrienden op te laden. Het is geen ‘verspilling’ als je een paar rijstkorrels op je bord achterlaat. Als ik mijn wasmachine ‘s nachts vergeet aan te zetten, kan ik die nu overdag laten draaien. Je wilt niet weten hoeveel hoofdruimte overblijft als je niet continu met dit soort dingen bezig hoeft te zijn!

“Heel voorzichtig durf ik opnieuw hoop te koesteren en zelfs plannen te maken voor de toekomst.”

De gevolgen voor mijn gezondheid zijn bijzonder groot, zowel mentaal als fysiek. Met het wegebben van de chronische stress is ook die strakke band om mijn hoofd verdwenen. Ik kan weer denken! Mijn creativiteit, mijn fantasie en mijn gevoel voor humor zijn weer terug aan het komen. Heel voorzichtig durf ik opnieuw hoop te koesteren en zelfs plannen te maken voor de toekomst.

Ook fysiek is het verschil bijzonder groot. Ik heb meer energie en mijn chronische pijn is minder. Daardoor breng ik minder dagen op bed door en ik kan op een dag dus (iets) meer doen. Het verschil is zo groot dat meerdere vrienden spontaan vroegen wat er veranderd is, omdat ik er zoveel beter uitzie.

En maak je geen illusies: ik voel me rijk, maar ik verdien nog steeds ver onder modaal.

Naschrift: Inmiddels is bekend dat Jochem’s opdracht per 1 oktober stopt. Hij is zich aan het beraden hoe hij daarna in zijn levensonderhoud kan voorzien.

Deze column is 2 september 2022, de Dag van de Verborgen Armoede, verschenen op WijRollen.nl.