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Just because I have ichthyosis doesn't mean I want your prayers Just because I have ichthyosis doesn't mean I want your prayers
(6 days later)
I walked to the post office and back this week. It's around a kilometre, and including talking to three friends and waiting in the queue at the post office, it was a 45 minute round trip. In that time, one man slowed down to a stop to have a look at me, and a lady pushing a little vinyl-covered trolley stopped me to offer me a pamphlet titled "A prayer to stop your suffering". I smiled at the woman, politely refusing her offer and walked on. I waved on the man, telling him to keep driving. There's no need to stare.I walked to the post office and back this week. It's around a kilometre, and including talking to three friends and waiting in the queue at the post office, it was a 45 minute round trip. In that time, one man slowed down to a stop to have a look at me, and a lady pushing a little vinyl-covered trolley stopped me to offer me a pamphlet titled "A prayer to stop your suffering". I smiled at the woman, politely refusing her offer and walked on. I waved on the man, telling him to keep driving. There's no need to stare.
I have a rare and severe genetic skin condition called ichthyosis. Approximately 20 people per million have my condition. My skin is red, scaly, itchy and painful. But apart from it landing me in socially challenging situations, I lead a really good life. I have a rare and severe genetic skin condition called ichthyosis. Approximately 20 people per million have my condition. My skin is red, scaly, itchy and painful. But apart from it landing me in socially challenging situations, I lead a really good life. 
These incidents, while occasional, don't upset me. However, I do take issue at people forcing their religious beliefs onto me with no background knowledge of my condition. There's no cure for it, and I don't need a "better" life, thanks (I have written about why I am not religious previously; this has a lot to do with how religious people have treated me over the years. That said, I understand that some of my readers may be religious, and some people do ask for prayer in times of need, and I respect that).These incidents, while occasional, don't upset me. However, I do take issue at people forcing their religious beliefs onto me with no background knowledge of my condition. There's no cure for it, and I don't need a "better" life, thanks (I have written about why I am not religious previously; this has a lot to do with how religious people have treated me over the years. That said, I understand that some of my readers may be religious, and some people do ask for prayer in times of need, and I respect that).
Friends with ichthyosis and other conditions have told me they've experienced similar unwanted healing hands, advice about faith healers and being made to feel guilty for being human.Friends with ichthyosis and other conditions have told me they've experienced similar unwanted healing hands, advice about faith healers and being made to feel guilty for being human.
Good intentions can be rude and presumptuous. I hate that people think my life must be so bad that I need prayer and pity from strangers. I hate that the prayers they offer may be attached to a sense of personal guilt revolving around feeling uncomfortable around me, especially when I'm clearly not suffering – I am just going about my day doing the things that they're doing too.Good intentions can be rude and presumptuous. I hate that people think my life must be so bad that I need prayer and pity from strangers. I hate that the prayers they offer may be attached to a sense of personal guilt revolving around feeling uncomfortable around me, especially when I'm clearly not suffering – I am just going about my day doing the things that they're doing too.
I get the sense that strangers believe we need to be granted forgiveness from past sins, to be healed of an infliction that is seen to be grotesque, and this with great condescension – just like a pat on the head, or an "it's so good to see someone like you out and about" comment. I also think that a lot of what people say to us is because they're pushing their own insecurities onto someone else.I get the sense that strangers believe we need to be granted forgiveness from past sins, to be healed of an infliction that is seen to be grotesque, and this with great condescension – just like a pat on the head, or an "it's so good to see someone like you out and about" comment. I also think that a lot of what people say to us is because they're pushing their own insecurities onto someone else.
There's an expectation that because of such misplaced good intentions, and especially because the religious aspect of the situation, that I will be polite. After all, religion is associated with kindness and charity. And so I am – I just walk on and smile. But these misplaced good intentions remain what they are: intrusive and condescending.There's an expectation that because of such misplaced good intentions, and especially because the religious aspect of the situation, that I will be polite. After all, religion is associated with kindness and charity. And so I am – I just walk on and smile. But these misplaced good intentions remain what they are: intrusive and condescending.
I would much rather the people who offer healing prayers put their good intentions to good use and physically help people in need. Maybe working at a soup kitchen, volunteering in a hospital or donating food, toys and clothes to a charity organisation for distribution in the community.I would much rather the people who offer healing prayers put their good intentions to good use and physically help people in need. Maybe working at a soup kitchen, volunteering in a hospital or donating food, toys and clothes to a charity organisation for distribution in the community.
Of course with every pitying person comes many, many polite people. I'd much rather a person say hello and smile than clumsily showing me their misplaced good intentions. My life is no less without religion or unwanted prayer and pity, just as it's no less with ichthyosis.Of course with every pitying person comes many, many polite people. I'd much rather a person say hello and smile than clumsily showing me their misplaced good intentions. My life is no less without religion or unwanted prayer and pity, just as it's no less with ichthyosis.
• This piece originally appeared on the author's blog and is cross-posted with permission• This piece originally appeared on the author's blog and is cross-posted with permission
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