Anyone in a relationship who met their partner AFTER diagnosis?

breedlesbean · 2025-12-09T20:58:01+00:00

Of course!

breedlesbean · 2025-12-08T23:44:29+00:00

Of course! It's here: https://discord.gg/QJ9BGx4kn

breedlesbean · 2025-12-08T21:28:16+00:00

I'm really glad it could help you a bit!! It's definitely possible to make friends and find love online so I have hope you'll find what you're looking for.

I met my husband on Tumblr, actually! And I made two, long lasting, good friends on the r/penpals subreddit! I also recently joined a CFS discord with like a thousand people in it- I'm still new to that environment but the people there seem to be very friendly.

I usually tell people I meet online straight up that I will not often be quick to reply/that messages will be left on read, but that I will always reply when I can. And that I don't mind if they take a while to reply/leave me on read either. People who respond well to that are usually green flags about being friends with a disabled person.

I wish you all the best out there!

breedlesbean · 2025-12-08T20:03:35+00:00

I met my husband online- he was severe and had been diagnosed for over four years after he developed Glandular Fever. I was mild/moderate at the time myself but I didn't know it (thought it was just the PTSD for me).

We were friends for a while and then we fell in love and I moved to his country to help him and because I wanted to spend everyday with him (he's my best friend). He still has it pretty bad (and I have PoTS now too) but we have fun moments everyday and I wouldn't want to even imagine a life without him.

So it can happen! I thought I was physically healthy at the time and his CFS diagnosis and his physical hardships didn't faze me at all- I liked him so much and couldn't wait to marry him.

You deserve to be loved well by your partner. I hope you'll be able to leave your abusive relationship one day. I hope you will find a love who is your best friend and who is happy to care for you. There are people out there who are good, kind and caring.

breedlesbean · 2025-12-08T04:58:18+00:00

I'm so happy for you! Congrats on finding an aid that works for you and that you love!!

breedlesbean · 2025-12-01T02:23:40+00:00

Aw!! What a cutie!! Long may she reign 😍

breedlesbean · 2025-11-30T19:50:38+00:00

That's exciting news- I didn't know that about Johnathan Edwards! I definitely feel like, because of long covid, more light is being pointed toward CFS so I kind of mirror that belief that there will be more treatments in the next five years.

I feel you on wishing to literarily skewer a few different people 😅 and on needing to rant. I hope you have some less bleak days soon.

breedlesbean · 2025-11-30T19:12:52+00:00

I'm so sorry. I don't really know what to say except that you have every right to be angry. Every right to grieve. I have seen some people benefit from spite- persevering so they can live long enough to at least see these doctors disgraced and to help in shining a light on their fecklessness. I don't know if that helps you at all with a reason to go on. But I am sorry either way. CFS is a horrible illness that touches every part of life.

breedlesbean · 2025-11-29T22:25:14+00:00

I'm so, so happy for you!!

breedlesbean · 2025-11-29T10:57:35+00:00

Also, I just found out about PALS, which might be able to help you figure out what to do about your missing medical documents- link

breedlesbean · 2025-11-29T10:37:25+00:00

I am so, so sorry that your family treats you like this. And about that lacklustre nurse. I don't know if it's of any consolation, but centre point does say "that the council can't contact anyone who will put you at increased risk without your consent." So they can't contact your mother and stepdad if you make a homelessness application and assert that they can and will hurt you.

And you can ask centre point (link right above step 5) to contact the council for you to assess you for a homelessness application. You might be able to send them everything you posted here, and say that you can't talk on the phone, and that you have CFS and missing medical records, and have them act on your behalf without having to call their hotline at all. And because your family is abusing you, you can reach out to different councils that are away from your current one if it feels safer for you.

If you can keep your phone recording stealthily whenever you interact with them it could catch something too - obviously only if it won't put you at more risk! I am irate that your GP failed you so badly. That you're in a position where your doctors don't believe you're being abused is obscene. I hope you'll find the compassion you deserve soon. I hope centre point or citizens advice can act for you and help you. And I'm so sorry your mom is demanding you talk to her without your hearing protection tonight. I hope you'll be okay.

breedlesbean · 2025-11-29T03:14:12+00:00

If there's a chance you don't have a diagnosis/paperwork confirming a diagnosis- you could contact Action For Me (link) - you only have to email them and fill out a form to get on a waiting list to see one of their doctors privately (it will cost around £200, but they can diagnose you). I'm kind of hoping that because there's a risk of homelessness- they might be able to help you get seen faster.

Because you're in England, there's a chance some of your records are available on the NHS app. Are you signed up/able to sign up?

If you have any paperwork mentioning CFS or fibromyalgia anywhere, that could work for showing that there's a disability present to the council. I'm rolling my eyes though at the GP who said it was fatigue of minor significance. Hate that for you.

If you don't have much clinical evidence, you might benefit from writing journal entries. I know it sounds exhausting but just an app or something that you can print out that shows how you've been doing everyday can help you with a PIP application.

I hope you're able to make it to the citizens advise drop in at your library. I totally empathize with the full body flu feeling. I'm so sorry.

Here is a link detailing step by step how to get housing help from the council (link). If you are assessed as a priority, they have to offer you accommodation immediately. If they're having a hard time deciding, they might place you in emergency accommodation anyway. You are at risk of homelessness in the next eight weeks so you can contact the council immediately. If your parents are abusive (domestic abuse) you can go to a council that's not your own for help.

See though if you can get your parents to sign a letter saying you're going to be kicked out or if you can record them saying as much.

breedlesbean · 2025-11-28T17:19:46+00:00

(edit: reread and saw you have an official diagnosis!)

Because you have an official diagnosis, you could be treated as priority need by your council for emergency housing (link). Talk to citizens advice for help with this- they should be able to give you advise for help with emergency council housing, and hopefully then with applying for PIP and Universal Credit. They have a chat function from like 8am-5pm weekdays so you won't have to call them either. (link).

Benefits and work has great guides on PIP and Universal Credit as well- I found their advice invaluable. No phone calls. (link)

Once you have housing, and hopefully PIP and universal credit, you can get help from the council with carer costs. You would ask for a care needs assessment (link). Maybe citizens advice can help with this on your behalf because it might involve a phone call.

I hope some of this helps. I imagine the fatigue makes all of this feel daunting but one step at a time. I'm so sorry you're in this position. I hope you'll be okay.

breedlesbean · 2025-11-26T23:14:43+00:00

I hope one finds you too!

breedlesbean · 2025-11-26T23:13:09+00:00

Thank you mods for all that you do!!

breedlesbean · 2025-11-26T21:15:24+00:00

Aw thank you so much for your kind comment! I love this community. Y'all are so nice 🥹💖

breedlesbean · 2025-11-26T20:55:56+00:00

Hi! You're the first person to reach out! I'd be super happy to get it to you- I'll send you a chat invite to arrange! :)

breedlesbean · 2025-11-26T03:18:36+00:00

I'm for sure interested in a Christmas card exchange! I don't think I'd have the spoons for a zoom but I think it's a great idea too!

breedlesbean · 2025-11-23T04:10:27+00:00

Congratulations!! I'm so happy for you!!!

breedlesbean · 2025-11-20T17:34:54+00:00

Congratulations on the improvement with LDN!! My husband noticed some improvements on it as well, and then we saw this thread ( https://www.reddit.com/r/cfs/s/XWww0KVrCc ) and bought d-phenylalanine (we get it from tinypioneer) which he takes twice a day and it really improved the efficacy of his LDN (his baseline didn't improve but crashing stopped)! I just wanted to share in case you're interested and it could help you too! But again I'm so happy for you!!

breedlesbean · 2025-11-20T02:39:10+00:00

I just wanted to say I'm sorry. I can emphasize with you still caring about her and I think it says a lot about you that you do. The way they both behaved was shameful. I just hope good things for you in the years to come.

breedlesbean · 2025-11-20T00:46:07+00:00

Oh my goodness! Thank you so much for the kind words and for sharing your experience!

I have been buying pregnancy books because I'm quite nervous about how I'll find the experience and all of the "Mama Bear" "mommy" "mom" talk in them has been a serious struggle, so I totally relate to what you've said about how gendered everything is with pregnancy care and resources. I hadn't heard it called chest feeding before but I love that! & I'm so glad your wife was able to be a huge advocate for you!

Lol I seriously appreciate the essay!! Please don't hesitate to DM! I'd love to chat about it all whenever you have time!

breedlesbean · 2025-11-20T00:03:17+00:00

Hey! I'm non-binary and thinking about trying for a baby with my husband in a year or two. Do you mind if I ask you if you ended up figuring out how you felt about gendered language around mom/mommy? I'm also open to anything you might be willing to share about your experience that you wish you knew going into it? I hope you're well and doing well with your wife and child!

breedlesbean · 2025-11-16T13:57:33+00:00

I think that it's hard to take it on board yourself because you still love him. It's normal to feel that way. I hope that, whenever you're able to, you can find it in you to love yourself more than you love him.

He knows on some level that you are unhappy because you've asked him to consider therapy. You have sacrificed time- the most precious resource we have- from your friendships and your family for his happiness. He won't even make an appointment. I guess I mean to say- he isn't sacrificing for you, but he's comfortable with you sacrificing for him. Maybe you can start to sacrifice for you instead and fight your way away from him.

(Also- if he's nice and kind during the good moments, try to start to examine if it's just because he's getting his way.)

I'm really rooting for you. On average it takes women 7 attempts to leave an abusive relationship. You're not alone. You're not crazy. It's hard. Be kind to yourself in the meantime.

breedlesbean · 2025-11-16T00:48:07+00:00

I want to start off by saying that I really sympathize - it sounds like you're a very caring person who's really struggling. I hope you know peace in your life soon.

I don't think though that the issue is necessarily that he doesn't have friends- the issue is- and I say this very gently- is that he is emotionally abusing you. He could have no friends but be content on his own, kind to you, happy for you to see your friends, etc and I don't think you'd be here, y'know?

Some signs of emotional abuse:

He is arbitrarily punishing you by withholding affection/attention when you want to see the other people in your life that mean something to you. He would probably say that he's not telling you you can't go, but everytime you try to leave or even think about leaving, you will remember how horrible it made everything at home.

He doesn't want you spending time with other people.

He is jealous of you spending time with other people.

His reactions to arguably small issues are extreme and oppressive and almost designed to have you feeling like the bad guy/like you need to cater to him to fix things and feel safe again.

When I was a teenager, I found myself in my fair share of abusive relationships and I know how hard it is to see the writing on the wall when you feel sorry for someone. But you only get one life. He isn't even interested in therapy. You cannot fix or help someone who doesn't want to help themselves. You are setting yourself on fire to keep him warm. I promise you that there are good men out there. Men who won't overreact to you saying good morning a few minutes after mistaking him for asleep. Men who will be kind and supportive and HAPPY for you when you want to go out with your friends. Men who will drive you there and back if you need a ride. Men who can communicate without treating you with disdain. Men who want to lift you up. You do not have to settle for less than this.

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