Shoutout To People Who…

I see a lot of shoutouts to people with invisible illness but they often ignore those of us who are invisible not because we look healthy but because we are so sick we become hidden from society.

This is the case for so many of the moderate-severe, severe, very severe, and extremely severe millions missing with myalgic encephalomyelitis or MECFS and millions more with long covid. severe ME is invisible not just in physical appearance but also in confining people to their homes and beds for decades.

It is worth remembering that while the majority of chronic illness spoonies on Instagram are people who can still hide their illness, at least temporarily. There is a huge population of chronically ill disabled people who have no choice but to live with their illness front and center. Who are too sick to work, to fake it in front of family for Christmas, to put on a cute outfit and makeup so they "don't look sick."

Unfortunately, visually-based platforms like Instagram are always going to better highlight creators who can still show up visually on the platform by taking selfies, going outside at least occasionally, wearing makeup or nice clothes, etc. I am personally quite guilty of automatically liking plenty of chronic illness posts not necessarily for content but because the influencer has a super cute vintage outfit or is out on a beach I wish I could visit. Even in the case of informational posts, cute formatting and the ability to make aesthetically pleasing content is dependent on functioning ability. As a severe patient myself this account skyrocketed in success since I hired a PA to help me make my content visually appealing.

All this just goes to remind us to think about who we see on chronic illness Instagram and how that is not always an accurate representation of chronically ill people as a group. Homeless, severely ill, impoverished, overweight, people of color and elderly demographics are severely underrepresented despite making up much of those with chronic pain and chronic fatigue. It is only through remembering who we are leaving out that we can create a disability advocacy movement that helps the most vulnerable in our community.