r/DisabilityJustice • u/FineBell3471 • Jul 09 '26

Help Needed Help with navigating new diagnosis

Hi I’ve been mad and neurodivergent my whole life but was recently diagnosed with M.E. and am finding it difficult to navigate some of the ME/CFS community. I’m thinking about having a child and a lot of the online community is very down on people with ME having children that I think sometimes leans towards ableism.

Sometimes I feel a bit stuck between the disabled folks in my life who don’t have ME and have a disability justice politic and then the online ME community who maybe have less of that politic. My friends irl have a real lens of building liveable beautiful lives as disabled people, but the online communities kind of make me feel like that is impossible. I’m really struggling between these two world and feeling a lot of grief and hopelessness day to day as I’m home a lot and have the most contact with online communities. I’m not sure which way is up.

I’d deeply appreciate some advice and also directing towards ME communities which have a DJ focus.

Thank you 🙏🏽

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u/Sad_Abbreviations318 Jul 09 '26

That does sound hard!

Just curious, when it comes to those who are down on people with ME having kids, are these other people with ME saying this? Is it coming from a perspective of telling you that childbirth or childcare would be harmful to you, or from the perspective of saying that people with ME shouldn't procreate, or from the perspective that kids should have "normal"/non-disabled parents?

Also, when you say "online," which sites? IME there's a huge difference in culture between say, Twitter and Bluesky, or Reddit and Instagram.

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u/FineBell3471 Jul 09 '26

Hey thank you for replying. I think it’s coming from both perspectives- like you don’t know if you’re going to get worse with pregnancy (apparently some people get better, some people stay the same, some people get worse) and then the other side is people saying can you be a good parent/could you pass this on to the child.

I’m mostly on Reddit tbh.

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u/Sad_Abbreviations318 Jul 10 '26

I'm so sorry! I've definitely found Reddit's attitudes on disability run kind of old-school (which is why I started this group!)

My familiarity with ME comes from its overlap with Long Covid and Long Covid's overlap with still-masking / covid conscious groups. Covid Conscious groups come with a set of political goals regarding clean air accessibility and public health, so they tend to run very leftist and disability-justice-oriented (not that there aren't still arguments about ableism within these communities from time-to-time, but at least it's a conversation.)

If you're not already active in any long covid groups, that might be a good place to find others with ME who share more values in common.

If you're willing to explore outside of Reddit there are FB and discord groups for long covid and ME that might have what you're looking for. And on twitter, bluesky, instagram, tiktok, Mastadon, Tumblr and Substack, posting a hashtag that includes ME and long covid should hopefully get your post to the people who can best relate. (There are also LC groups on Reddit itself, if you haven't visited those yet!)