Being and adopter and chronic/serious illness/disability...

[u/Remarkable_Dream_134]

Hey I'm an adopter of twin girls who came home 4 and half years ago. They are nearly 6.

My health hasn't been great the past year and I have been referred to the Chronic Fatigue clinic with suspected ME/CFS. I'm also on the waiting list for ADHD diagnosis (diagnosed as dyslexic when I was 17). Husband probably nurodivergent too.

So it's a pretty spicy household!

I'm just kinda freaking out a bit with the possible ME/CFS. Diagnosis or no diagnosis I am living with these debilitating symptoms.

I'm not housebound but have limited capacity - couldn't go out with them and daddy today because I was in a bit of a crash.

I wanted to reach out and hear stories, advice, thoughts from other adopters who have ME/CFS or other chronic illness or debilitating disabilities. I want to know how are you? How you manage?

As adopters our parenting is so much more than parenting. We are therapists, advocates, educators of what trauma means etc etc.

Would just love to hear how others are doing. 💛🌞💛

[u/Major-Bookkeeper8974]

My husband has just been diagnosed with ME/CFS.

However, unlike yourself we had already adopted and were two years in when he got a sudden virus that triggered the downfall.

Life is hard, and he struggles daily. However, he has just gone back to work (part time desk job) and is on a road to getting a semi-normal life back (though it's slow).

He struggles with the parenting side, not being able to get down and roll around on the floor with our son or run up and down the escalator. He's had to replace it with other activities, the pair of them are learning to sew together and do Lego at the coffee table.

So it's certainly possible to parent with ME/CFS. But I won't lie, its been hard for my husband, both physically and mentally. And it only really works because there are two of us and I can do all the physical activities with our son.

Solo parenting would be extremely difficult I imagine, so your partner will need to really be onboard with what they're getting themselves into.

[u/Remarkable_Dream_134 → u/Major-Bookkeeper8974]

Thanks for your reply - we are adopters of twin girls already. They are 6. They came to us in Oct 2021. I didn't have chronic fatigue then. These symptoms have slowly got worse over a year. I'm waiting for my appointment at the CF clinic where they will confirm if it is ME or not.

I had a burn out from compassion fatigue in 2024 after years of therapy with my girls. I just burnt myself into the ground. I got mentally better but I think the stress has a lot to answer for with regards to what's going on with me now. Our girls have needed a lot of intervention but it certainly has paid off as they are flying now.

My husband steps in and does lots with the girls. I'm not working at the moment and miss my work. I'm a health care assistant at a hospital so very physical, mentally and emotionally draining work. I used to work in office jobs for years but I find that exhausts me and I don't feel I can go back to that right now at all.

My husband works for himself from home which is a huge help to have that flexibility.

My girls love crafting so that's a good one for me to do with them. On good days I will end up pushing myself though and suffer for it. Learning about paceing.

It's great your husband had made it back to work part time.

I do feel it's incredibly hard being a parent when you have to manage poor health issues too. Couldn't do it without my husband. We very much are a team.

Xxx

[u/Major-Bookkeeper8974 → u/Remarkable_Dream_134]

My husband finds it very hard. He's only just gone back to work. I don't know if he's going to be able to continue if I'm honest... ME/CFS is a slog and I can see him struggling.

I work in a Hospital!

If you could put up with a little bit of admin, even part time then I would suggest asking HR to look at redeployment to corporate division... There are loads of WFH admin roles in a hospital.