This is to the woman who told me I will kill myself if I keep doing what I'm doing, by which she means, not exercising up to her standards.
This is to that woman who keeps comparing me to people with other illnesses. Who keeps emphasizing exercise, and truely believes I should just re-think my illness and throw away the devices that aide me.
I don't even know what to say to you. You're someone I really liked, and it would be so good if you were on my side, supporting me in fighting this awful illness. But instead it feels like you're fighting me.
This is to the family member who sincerly asked, when I finally asked for help with something that would improve my life: “Why don't you do it yourself? That's more fun.”
Well, because I can't. I have less than 10% of the energy of a healthy person. And that's on a good day.
This is to the family member who expressed her worry that me and the family are growing apart because I never visit.
Don't you realise how ill I am? Don't you know after all these years how much it costs me to travel? Why don't you visit me instead?
This is to the family member who advices me a new diet or vitamin pill every month because you heard a podcast about a disease I don't even have.
You're not my doctor. Stop trying to fix things that even doctors can not fix.
This is to the extended family members who spent time together every year without even once asking me if there's any accomodations they could make so I could be there.
I miss you guys. It's been 5 years since I saw any of you. Don't you miss me back? Don't you want to put in a little extra effort so I could come, too?
This is to the friends who think I stopped caring because I cancelled our plans 3 times in a row.
I didn't stop caring. I just can't plan more than one 2 hour activity per day. And even that is no guarantee I can actually come.
This is to all the doctors who gaslight and fatshame their patients. This is to the doctors who tell my peers their illness isn't real, is psychological, or just because of their weight.
Even if I didn't met you myself, your words get around. You're making it harder for me to search medical help when I need it. Because even though I have learned to stand up for myself, it's too much of my energy, wasted. Don't tell me or any of your patients I wasted your time. You get paid at the end of the day. It's you who wasted my energy.
I'm so tired. And I don't mean I'm tired because I have an illness with 'fatigue' in its name, cause I am, but I'm even more tired of explaining myself. Telling the basics of my illness again and again. Defending myself against your misinformed advice and your lack of believe in its severity. I'm tired of constantly having to inform you of the senserity of my illness. I feel like I have to do that so you'll understand me. I would rather do the opposite; inform you of all the little joys I have despite everything:
I can walk 500 meter now. Do you know how many gardens you can pass in 500 meters? Every garden is a tiny world. They all have beautiful flowers right now.
And on days when that 500 meter is too much, I can stare at the tree outside my window. It's growing. And I have plants that developped themselves from seeds, and they're now little alive beings.
On a bad day, when I'm bummed out because I can't do some activity, I can still (9 out of 10 days) read a book. Do you know how much joy a book can bring? I'm living the wildest lives in so many fictional realms, but my even bigger passion is non-fiction. There's so much knowledge just there for me, waiting to be devoured.
I want to tell you about the internet friends who have my back whenever I complain about one of you guys. I want to tell you they make sure I never feel alone.
I want to tell you, my life is filled with joy. So many happy moments. But I'm afraid that when I tell you that, you'll take my illness even less serious. So I tell you about my symptoms and the things I couldn't do instead, and I'm worrying I'm becoming an unlikeable grump.
This is to my friends, my family, and to the many people who are involved with me professionally:
My illness is incurable. But your attitude can change.