This is the fourth part in a series in which I open up about living with chronic illness. Here are part one, part two and part three.

Sometimes it’s the internalised voice, sometimes it’s through prodding by another: ‘there are people worse off than you. What are you complaining about? Other people have real problems.’

This makes me sick. Sure, other people are worse off than me….
But does that mean I shouldn’t be concerned with my own welfare?
Does this mean my problems are not legitimate?
Does trying to help myself mean I don’t care about other people’s problems? And, by extension, does my self-advocacy not open pathways for others?

Of course it’s rubbish. The “real problems” argument is a fallacy, designed to diminish the experiences of marginalised people. It is designed to guilt us and distract us, make us shut our disruptive annoying mouths.

Conceptualising my issues as “problems” is problematic in the first place. I can’t speak for other people’s experiences, but I see the lifestyle differences between me and abled society as a different way of doing things, not problems. But because abled society wants to ignore me, relate to me as an unfortunate anomaly, I need to be dealt with as a freak of nature with a sizable side of red tape. (Did I mention official documents, local governments, schools? It often feels like they’re trying to not get sued, not to help me.)

I believe in advocacy wherever it’s needed. Ranking oppressions and issues is bullshit, ignoring the intersections, compounding, delaying help.

Women are meant to pick up the pieces, carry on, be resilient, fix all the problems. So not only am I being guilted by people who would never think to put all this on a man, I internalise these messages. ‘I’m not good enough.’

And maybe I could struggle harder. But then I tend to be set back, more exhausted, symptoms exacerbated. I should be allowed to assess my own capabilities without smirks of condescension and a ‘you’re doing great. But you can do even better!’ I do not want to hear it from you. What standards are you trying to put on me? If you could approach the way I’m feeling, the kind of life I live, you would recoil from the amount of effort that can go into putting on my clothing, doing addition and subtraction, holding a conversation. I am doing beautifully, simply because I am doing. The shame all comes from the expectations of others.

So when this message gets replayed to me, by me, the split replicates itself in me. That’s not right. I have privileges, this is not one. It’s painful to have a piece of my mind turned against me. It’s disablism to smarmily tell me to look at the bigger picture; do you think I’m not aware that there are people out there who can’t get treatment because of where they live or money or who they are?

But all I can do is keep going and keep the truth in mind and keep saying my own words, because in this world, and especially in my internal spaces, this body, this heart that keeps getting turned aside, I will not be silenced.