On this site I tell about my life as queer with a chronic illness. As a passionate storyteller, I exchange information with striking examples and personal experiences. Hopefully you are able to better empathise with my situation. And with that of many others...
About 2% of people with ME develops very severe ME. These are the people who are in bed 24 hours a day, 7 days a week. Who can't do anything anymore. Who lie in a dark room, because normal daylight is overwhelming. Who wear headphones, because everyday noises are too much.
In recent weeks there has been a lot of talk about criteria in ME/CFS. One organisation is in favour of the International Consensus Criteria (ICC), the other organisation wants the broadest possible target group. What's best now? I don't think you can use one fixed definition for our target group, because the definition depends on your goal. In this article I explain why that is the case.
For more than 25 years, Jochem Verdonk has been involved in all kinds of interest groups for people with a disability or chronic illness. Despite all the differences, he also sees important similarities. Organising meetings for peers is such an similarity. What makes peer contact special?
Sometimes I have a good day and I go outside incognito. Then I'm a roller who is walking. A roller in disguise, so to speak. That is a disconcerting experience, which shows me again how easily I have become used to the privilege of being a roller.
Several years ago I came upon the path of paganism. It appealed to me and now I consider myself a pagan. Not long after I decided I wanted to go “into the (pagan) teaching”, I became chronically ill. My illness comes with some disabilities, which changes my path unexpectedly.
During rides with Regiotaxi and Valys I usually have a chat with the driver. All kinds of topics are covered, from the driver's dogs to COVID, from my disability to politics. Often I am asked if I have a job. “Sure,” I answer. “I am the manager of a dynamic team.”
The Online ME Living Room Groups are gatherings for people with ME/CFS. Started as meetings in the living room of founder Jochem Verdonk, the meetings now take place online. In May, the groups will be five years old. Reason for a look back and a look ahead.
Sex is important to me, as it is to most people. But since I became chronically ill, sex is no longer self-evident. How do I solve that? With the necessary kinds of tricks…
What is it that the world assumes that your head isn't working properly when you use a wheelchair? Why do my wheels immediately put me in the category “completely dependent”? This patronising is pure discrimination! Not my wheelchair, but that imposed pitifulness makes me disabled…
In general, sports have my complete disinterest. I just don't care what league has been going on now or who will win. Apparently I'm not that competitive. But the Tokyo Paralympic Games turn out to be a different story…