Stacks Image 1901

Awareness Starts With Us

I was inspired by the movie Milk about Harvey Milk. He gathered his early group of gay men and told them they had to come out of the closet despite the prejudice they would face because every person they didn’t tell was someone who didn’t know they personally knew a gay person which puts a face to it, humanizing it, making it harder to be prejudicial.

"Every gay person must come out. As difficult as it is, you must tell your immediate family. You must tell your relatives. You must tell your friends if indeed they are your friends. You must tell the people you work with. You must tell the people in the stores you shop in. Once they realize that we are indeed their children, that we are indeed everywhere, every myth, every lie, every innuendo will be destroyed once and all. And once you do, you will feel so much better."
- Harvey Milk

"Rights are won only by those who make their voices heard"
- Harvey Milk

"We will not win our rights by staying quietly in our closets"
- Harvey Milk


I have thought for some time that ME/CFS is in a similar place as the LGBTQ community was back then. Honestly we’re probably worse off because we’re so sick we can’t even live some sort of private life like an LGBTQ person could. But it doesn’t matter it’s similar and we can learn from history.

This is one of the reasons I decided to "come out" about having ME/CFS on my photography website. I thought that not only would everyone I know learn about the illness but people who found my website would also see it. They would hopefully connect my photography work with an ME/CFS patient and make it more difficult to de-humanize me with all that artwork staring them in the face. All horrific acts in the history of humanity have been done by dehumanizing a group of people. From prejudice to genocide. So we need to humanize ME/CFS. This is how real awareness will begin.

Let’s learn from history. Awareness starts with us. We can no longer sit around waiting for other people to spread awareness about our illness or worse, lying to the people in our lives to avoid discomfort and prejudice while privately complaining about the lack of understanding or awareness on ME/CFS social media (which might feel good but accomplishes nothing).

There are exceptions of course. Many of us are dependent on people and doctors who don’t understand and in these cases it may be necessary to minimize use of the ME/CFS diagnosis in order to continue receiving the care you need both at home and from a doctor in order to survive. Feel no shame in having to do this and know how sorry we all are that you have to.

I’ve been lucky in this way. Yes I’ve had lots of horrible experiences with prejudicial doctors and friends but my family truly understands that I have ME/CFS and that it’s a horrible disease. And I’ve been lucky enough to eventually find doctors who understand as well.

I tell everyone, and I use both names (ME and CFS). I’m not afraid of telling anyone that I have Chronic Fatigue Syndrome. If they judge me they can fuck off.

Remember - every person you don’t tell that you have ME/CFS is a person who doesn’t realize they personally know someone with the illness or worse doesn’t even know the illness exists. A huge part of the reason there’s so little awareness and funding is because patients so often hide their illness from the people in their lives. They do so because of the prejudice they experience but in the long term, it only perpetuates it. It’s time to stop the cycle. If you’re in a position where it’s physically possible, even if it’s uncomfortable, tell the people in your life.


Blog Archives

Year / Month