r/cfs • u/nariamna • 1d ago

Another quick rant

Today me and my mom had a conversation and I tried to explain to her what I was dealing with when it came to CFS and for the first time ever it seemed like she tried to understand a bit. Yes there were also comments like "how can u do this but not this" and "You're not helping yourself" but at one point she came back into my room and tried to compromise and I felt awful because some things just CANT be compromised when you have CFS.

For example "Okay I get ur unable to work full time anymore so how about part time?" or "i get that ur senses are all messed up but laying in the dark will only worsen ur depression how about going downstairs and read like u used to?" It hurts because I can see she's trying to give a little but I just CANT.

It's not that I'm trying to be difficult, its that ME/CFS is such a complex condition to manage and making sure I don't push myself is a priority for me and there's things I just CANT do in order to make sure I don't end up severe like so many people unfortunately have.

I refuse to push myself past my limits.

14 Upvotes

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u/Tom0laSFW severe 1d ago

What the hell man. Would she try to compromise with someone who couldn’t use their legs? “Ok I know you need the wheelchair but how about you only use it sometimes so you can build up your strength”. Or someone who couldn’t see? “Ok I get that your cane and guide dog are helpful but how about you try going without it some days to build up your resilience”.

These examples are deliberately ridiculous. This is what she is asking of you.

She has no right to treat your illness and health needs as a negotiation, full stop. Anything short of accepting what you and your trustworthy doctors (if you have any) say is, frankly, abusive.

Her perspective does not matter. Until she can accept that, and stop expecting a vote in your health needs, she is abusing you

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u/nariamna 1d ago

Unfortunately, this is my reality. I almost said to her it's like telling someone who just had chemo to go for a run. She's dealing with so much stress as well financially, and with her own health, it makes me feel guilty even though I know it's not my fault and I didn't choose this. Regardless I can't keep pushing myself for people because the consequences last a lifetime.

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u/Tom0laSFW severe 1d ago

Ahh dude I’m sorry you’re in this position that’s so difficult

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u/Tom0laSFW severe 1d ago

You should tell her that example btw. She probably won’t get it but it’s a good example

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u/Public-Pound-7411 1d ago

Try getting her to watch Unrest or similar maybe? If she’s trying to understand, those can be good tools.

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u/nariamna 1d ago

The guilt that's comes with CFS really is awful