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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...

Living with ME/CFS is… Not realising you have the flu.

Dog [photo: dife88]

Since I have ME/CFS, I haven't had flu! No. Again: since I have ME/CFS, I don't notice when I have flu. Because to me the symptoms of the flu are so much like the symptoms of ME/CFS that I can't tell them apart. That is why it often takes a week before I realise I am not having a bad week, but I have flu.

Sauna policy discriminates against transgender people

Sauna [photo: Ulrike Leone]

A while ago I heard about a sauna where they apparently don't know what to do with transgender people. In this sauna, the policy applies that “women” may wear a bikini, panties or top and “men” may only wear a towel. In this sauna they base gender on the legal sex of the customer. So, the letter in the passport. Inquiry showed that binders are not allowed in this sauna.

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Speech confusion

Bedroom [by Erika Wittlieb]

At one point I saw an occupational therapist as part of a rehabilitation process. One day they asked me what time I normally get up. That varies a lot and depends on whether I have a good or a bad day. On good days I get up at 10 in the morning, on bad days I don't get up until 4 in the afternoon.

Living with ME/CFS is… Getting lost in the fridge.

Trees in foggy snow [by Waldrebell]

One day I wake up. I'm looking in the fridge, the open door in my hand. I hear someone asking: "What am I doing here?" For a moment I am surprised, because I am sure I didn't say anything. Yet it is my voice. I look around and I see a plate with two sandwiches on the counter. I realise I'm making lunch.

14th June: Divine limitations – a trip with Bes

The god Bes

The PFI-NL Bes Network will organise an online meeting on Sunday the 14th of June 2020. During this meeting we meet the cheerful, little god Bes and explain why our network is named after him. And we will discuss what we recognise in Bes. We close the afternoon with a Bes talisman.

“How good you do this for them!"

Sign for I Love You

Years ago I was on my way to the cinema with a group of friends. On our way we were approached by someone who asked for directions. No one in the group responded, except for me. That made sense: I was the only hearing one of our group. After I showed directions, they asked me if I was their mentor. "No, we are friends on our way to the cinema." I got an admiring look and the compliment that it was really good what I did.

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