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Personal stories about my life with ME/CFS.
In the picture: Paralympic Games
Submitted by Jochem on Thu 02/09/2021 16:37Chronically ill and (no) sex
Submitted by Jochem on Fri 02/07/2021 00:00Speech confusion
Submitted by Jochem on Fri 04/06/2021 07:26Thinking in Lego, building in Duplo
Submitted by Jochem on Fri 28/05/2021 00:00Inhuman
Submitted by Jochem on Wed 16/12/2020 11:01Belonging: to feel at home
Submitted by Jochem on Sat 15/06/2019 10:20It is important to have a community where you are among like-minded people. Where people accept you as you are, where half a word is enough. In short, where you are at home. For me, that is the community of transmen. Only there are made no (unspoken) assumptions about my gender, my youth and/or my physical appearance. Only there I can be fully myself without expectations.
ME/CFS and the MUPS myth
Submitted by Jochem on Fri 05/04/2019 22:51For a long time I didn't want to write about MUPS, for several reasons. Because ME/CFS is not a MUPS. Because I don't want to encourage the MUPS myth around ME/CFS. Because the MUPS myth bears witness to an unparalleled arrogance. Because... However, I notice it is time for me to do write something about it. Why? For exactly the same reasons!
Can or can't ME/CFS be (bio)medically identified?
Submitted by Jochem on Fri 15/03/2019 19:05In various groups or forums people regularly complain that it's so annoying that ME/CFS can't be determined biomedically. I think docters are able to determine ME/CFS biomedically indeed. After examination ME/CFS specialists are able to determine whether a person has or hasn't ME/CFS. They are able to exclude ME/CFS as well, for example if there's evidence of another disease.
New normal
Submitted by Jochem on Tue 05/02/2019 21:49Now I have been ill for about 3 years, something strange happens to me: I am starting to forget how it used to be. I realise very well I could do much more for the ME/CFS than I can do now, but the memory of my old life is starting to fade. I have become so used to my current situation that I can no longer imagine well what my former life was like.