I have been thinking a lot about how to write this blog post, because it is about other people’s transgressive behaviour towards people with illnesses, and about how difficult it can be to step out of the role as “nice girl” and say enough is enough.
Last Friday I went to my weekly workout at the physiotherapist’s. Before working out I had decided that I would sit on a café a write a bit. I get into the café where the friendly Italian owner is alone. He asks if he can sit with me and have a cup of coffee – he is bored, it is cold outside and there are no customers. I would have liked to say no, but I’m too polite and I didn’t want to have to explain how a MS-fatigue-brain just needs everything to be quiet.
It didn’t take many minutes before a man – apparently a regular customer – walked in to the café. He said hi to the owner, looked at cane and immediately asked: ”what’s wrong with you?”. I was a bit surprised that he went for the “what’s-wrong-with-you-questions” so quickly. We were after all at a café and he hadn’t even sat down or taken of his winter clothes. But then again, I am so used to curious questions that I just answered: “I have multiple sclerosis”. Then he proceeded to talk about how many more people are sick in Denmark than elsewhere (I have no idea how he has gotten that idea), and about how we would all be cured if we would just follow the invention that he had imported from the US. His “invention” was a healthy diet and without even asking about my general health or diet he recommended that I began a diet change. He didn’t let me say a word and I started to get a hold of my laptop to signal that I was ready for him to leave… It didn’t work, so I resorted to saying that I am eating healthy and following my doctors’ recommendations. It only made him more aggressive and he scolded me claiming that it was my own fault that I was sick when I didn’t want to listen to him.
At that point I had had enough. Unless you have a chronic illness yourself you have no idea how much “well-meaning”, but aggressive, advice you have to listen to. I usually just take on my mental earplugs, but this guy was just too much. Seriously, I was sitting in a café having a bald chemo head and I am fairly certain that I didn’t look like someone who would be cured by eating more carrots. Therefore I stood up and said “you know what, I don’t have to listen to you or accept that tone” and then I left. Afterwards I was really angry at myself for not just telling him to get away from me, but then again, I also knew that I was too angry to focus with him in the room.
The worst part about these kinds of experiences is that they are such a violent intervention into your privacy. A lot of people have good and well-meaning advice without being condescending or rude. For instance, people tell me that they have read that magnesium is really beneficial when struggling with spasms in the legs. Then you can have conversation and I can say that I know that it helps a lot of people, but so far it hasn’t done much for me. Thus, it is not the advice itself, but the way in which it is delivered. It can be delivered in a manner that implicitly – or as in this case – explicitly accuses someone of being to blame for his or her illness. It is an ideology that assumes that everyone can fix everything including chronic illnesses.
Obviously, it is beneficial to eat a lot of vegetables! But no matter how many vegetables I eat the MS attacks continue. It would be great if rule number 1 and 2 for talking to and with people with chronic illnesses were: 1) People with a disability have google and they use it too seek out information about their disease. Please don’t tell people you don’t know something you have read on some conspiracy website. 2) The fact that a person has a visible illness or a body-worn aid doesn’t grant you permission to walk all over their privacy, comment on their body or tell them what to eat and how to live their lives.
To conclude: The next non-healthcare professional who tries to tell me what to eat and how to live my life will get a slap on the shinbone with my cane.