Thread by @broadwaybabyto

I’ve got a family member who hasn’t seen me in 5 years because they “don’t do sick”. Suddenly they wanted to visit. I’m housebound - which limits options. When topic of masking came up - I was rudely shut down. They demanded “normal”. 🧵 on the importance of setting boundaries /1

I became disabled before the Covid pandemic. I’ve got multiple severe health conditions that leave me stuck in bed (and horizontal) the vast majority of the time. As a result I can’t “hide” the fact that I’m sick. /2

This particular person has been rather rude on a number of occasions about how they don’t want to have to see how sick I am. Positive thoughts only type vibe. I was even excluded from a zoom Christmas because I couldn’t fake well & my sickness would spoil the holiday. /3

Here’s the thing - being disabled is lonely. The pandemic has only made that worse. The isolation wears on you and it’s easy to accidentally get your hopes up when you really should know better. When this person offered to visit … I thought maybe things had changed. /4

I got my hopes up - only to have them crushed. I mentioned that the visit would have to be relatively short (I have bad crashes if I over exert or talk/socialize too long) and that I would need them to mask. /5

I’m immune compromised and am barely holding onto my baseline as it is. I recently had a minor skin infection that made me so sick I was fainting and injured my wrist. My body would NOT do well with Covid. And I’m unwilling to risk my baseline. /6

I said I would happily provide the masks … but it didn’t matter. I was told that my “stringent requirements” were ridiculous and that THEY deserved to have a “normal & happy visit”. That if I wouldn’t accommodate their idea of normal - they wouldn’t come. /7

First off - I reject the idea that one person can determine another person’s idea of normal. Second - if you can’t be happy just because you have to wear a mask for an hour… you may need to re-examine some things about yourself. /8

The idea that I should risk what’s left of my health just so someone else can feel like things are “normal” is patently absurd to me. So I held my ground and the visit was cancelled. This person is now angry that I’m unwilling to see them. /9

This is where boundaries come in. I was completely willing (and actually excited) to see this person after so long. I simply set boundaries to protect myself. They didn’t agree & cancelled the visit… as is their right. They do not have the right to shame me for my boundaries /10

This is when I mourn the loss of empathy & compassion that’s been escalating since Covid. I don’t think someone else has the right to decide my “normal”. I find it incredibly insulting that they insinuated they were “deserving” of a happy visit (as though I somehow wasn’t). /11

This person hasn’t seen me once in five years. Which means they’ve not helped me with my severe illnesses. Multiple hospital trips, serious setbacks, infections, injuries…. They’ve been looking the other way and living their “don’t do sick” normal life. /12

They’ve shown me that they aren’t capable of accepting my illnesses and they aren’t willing to offer help when needed. So who are they to demand I risk my health for their comfort or joy? If I get sick and end up even worse off than I am now…are they going to help? /13

Of course not. Yet despite this glaringly obvious fact they still felt entitled to ask me to put my health on the line for them. And they feel comfortable shaming me for not backing down and acquiescing to a visit that aligned to their version of normal. /14

I’m hurt and disappointed - but I tell this story to encourage everyone to set and stick to boundaries that protect their health. We can’t control what others do but we can refuse to compromise our own safety. /15

There are many people who refuse to acknowledge the realities of chronic illness and who won’t accept that we are still in a global pandemic. It’s a dangerous combination of denial and willful ignorance - one that results in people like me being pressured into taking risks. /16

If you’re struggling with people like this in your life - please know you’re allowed to set and stick to personal boundaries. You’re not abnormal, you’re not robbing people of joy and you’re no less deserving of happiness than anyone else. Don’t let anyone tell you otherwise. /17

It’s getting harder and harder to find people who genuinely support disabled individuals - ableism is rampant and eugenicist attitudes are growing at an alarming pace. But there ARE good people out there. We need to find & cherish them. /18

Lastly please keep sharing your stories… even the hard ones. It helps people feel they’re less alone and it’s important to bear witness to the suffering & abandonment many are dealing with. Plus you never know when you might change a heart & mind and possibly save a life. /end