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To wonder if “friend” is right and people are judging me (disability)

166 replies

Redgreenfroggy · 04/08/2024 05:13

This has been on my mind all night and I can’t sleep

in a nut shell I have epilepsy, was diagnosed at 21, had to give up work for a year while I got to grips with the seizures that were never controlled dispite different treatments, medications etc.

I managed to go back to work after a year. 6 years later after having about 2 years of pain I was dignosed with fibromyalgia. The symptoms of this aggravated my epilepsy such as tiredness and pain and I ended up having up to 20 seizures a week, some grand mal and some small.

2 years ago I gave up work as my fibro was bad and I was still having up to 20 seizures a week and went on esa and pip. I was spending the time I was not working sleeping or crying in pain. I was not able to do things with my son and DH. DH was taking full responsibility for the house dispite working full time (he never complained). It just got to a point where I was either working, sleeping, recovering from seizures or in terrible pain. Work was becoming impossible and they were making moves to get rid of me on health grounds as I was having so much time off.

Now I am still having as many seizures and am in pain but I do manage to do some house work and get out and about with my husband and little boy. I feel removing work from the equation means I am less tired and not in as much pain. When I increase my levels of doing stuff the pain gets worse so I need to plan that if I am really busy one day the next day I am likely to be wiped out the next day or even a couple of days. I also seem to get more intense seizures with the pain and tiredness increase that take longer to recover from.

A friend came round today that I have known since high school and to tell you the truth if we met now we would not be friends as we have very little in common. She asked when I would be going back to work. I said at the moment I have no plans to but in the future maybe. She then said everyone judges me behind my back. My DH who overheard asked her who is judging me, when she did not name anyone he asked if she judged me. When she said yes DH asked her to leave.

As she left she said that I was the clever one at school and it should be me with the big house in a posh area instead of her and it’s a shame my son has to live on a half council estate. (Our area is about half council and half privately owned). My husband said she was a nasty bitch and i am worth a million of her. She was then out the door and my husband slammed it behind her. I will never talk to her again. Her husband is a friend of my DHs unfortunately but he said he is willing to let the friendship go if he has to same stupid opinions as his wife.

I am not worried those people I think of as friends are judging me. I don’t have any joint friends with her. My husband said my real friends will never judge but I just feel like I have had the wind taken out of me.

OP posts:
KvotheTheBloodless · 04/08/2024 09:43

The work thing is a red herring - of course you shouldn't work if you're too unwell, she can fuck off.

What she might be judging as well, though, is you having a child that you're unable to look after or be left alone with for long periods, and that you conceived that child post-diagnosis. If she's struggling with infertility, and feels that she and her DH can provide a fantastic childhood, she's likely bitter that you've had a child in less-than-ideal circumstances when she can't have one.

I wouldn't be friends with her though - fine to think that, but incredibly awful to say to someone that is meant to be your friend. And the work comment was just her being a shit.

AGodawfulsmallaffair · 04/08/2024 09:41

Wow, what a revolting woman. I doubt anyone else judges you, but fuck them if they do.
Your husband though, what a guy!

LBFseBrom · 04/08/2024 09:39

Redgreenfroggy · 04/08/2024 05:16

For example we went to London with friends a few weeks ago and I had to miss a day and a half and stay at the hotel. Me and DH also tended to get back to the hotel earlier then everyone else. everyone said they were ok with and expected it. But now I am so they think I am just lazy

I doubt very much if most people who really know you, think you are lazy Redgreen. It is more likely that one (ex)friend suggested it and others said, "Mmmmm". I've witnessed that sort of conversation in which folk try and avoid any confrontation and take the easy route by being vague in their responses.

Good on your husband for sticking up for you and telling this person to leave. She is horrible! You don't need someone like that in your life.

I can understand how hurtfut that was. The person was obviously jealous of the younger you who was cleverer and brighter than most, no doubt her she has harboured resentment for years and couldn't hold it in any longer. Knowing how vulnerable you now are, she was well aware of the effect her words would have.

Please put her behind you, who wants a nasty, bitter individual with a loose tongue in their circle?

I have no difficulty in believing you have severe health problems, Redgreen. I had a very good friend who developed epilepsy at the age of 24. It is possible that it was the result of a car accident in which she was a passenger and sustained a severe head injury, aged nine. She was a lovely, lovely person and had terrible difficulty at work but she really did try hard, Her epilepsy was not controlled at all and there were frequent fits. She never married and had children in spite of being attractive and much admired by men (who often took advantage). I was extremely fond of her.

I am so sorry about your fibromyalgia, I know that is painful. I expect you are on drugs to try to stabilise your epilepsy, some of which may exacerbate your pain and often cause depression which of course exacerbates pain. Neurologists try this and that drug, it's all trial and error, the brain is still very much an unknown field.

You are a trier, Redgreen and you have achieved more than many with your own home, marriage and a child. Good on you.

Take good care of yourself.

historyofbritishdesign · 04/08/2024 09:38

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Wow.

A close family member of mine has had to give up work due to their fibro. Some days they cannot lift their head from the pillow let alone contemplate doing a job. They're desperate to work and feel like they are "normal" but it's a very debilitating condition for them and no home or flexi working would solve that.

Wishihadanalgorithm · 04/08/2024 09:38

This woman was rude. It’s true some people may judge but if they do, they aren’t nice people and TBH, why does it matter what people think? Your real friends will know the truth.

Your husband on the other hand sounds fantastic.

CrunchyCarrot · 04/08/2024 09:38

Your DH is an absolute star!! And he's right. You're better off without 'friends' like that!

ExhaustedHousewife · 04/08/2024 09:34

OP this arrangement clearly works for your family,you have a lovely, supportive Husband.Live your life and forget this so called friend.

Angelik · 04/08/2024 09:34

@thelonelyones I can only conclude you're thick as fuck. I hope your employers identify you and sack your moronic ass.

@Lose6pounds do you realise your post came across as judging? It reads as though you're implying the OP is making it all up? I hope you're not inferring that. But if you are you belong in the same ableist bin as @thelonelyones

historyofbritishdesign · 04/08/2024 09:33

What a nasty, spiteful woman. Who in their right mind would even think that, let alone say it?

I am sure having either fibro or epilepsy is greatly challenging, let alone both, and I sympathise OP. Your DH sounds great though and a wonderful support.

I'm sorry you had to be on the receiving end of her utterly callous comments.

ExhaustedHousewife · 04/08/2024 09:33

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What a disgusting attitude to have,especially working with disabled people,you should be thoroughly ashamed of yourself as you clearly have no empathy whatsoever and should not be working in the role you have,unbelievably nasty.

godmum56 · 04/08/2024 09:31

OP why have you kept her as a friend? She sounds like a completely nasty person who takes her own frustrations out on you.

lazyarse123 · 04/08/2024 09:30

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Wow. What a nasty post. I would have thought that having mutual issues yourself you would understand that not all illnesses manifest in the same way.
My son has severe mental health problems and cannot work and a lot of people think he is lazy inc!uding his own brother but they haven't seen the full effects of his illness do these people sre best ignored.

godmum56 · 04/08/2024 09:29

MoosesOnGooses · 04/08/2024 05:18

People will judge, everyone and everything regardless of situation. It’s not personal, it’s human nature.

Anyone who says “I don’t judge” is lying.

You’ve just got to do what’s right for you and get rid of any toxic people in your life.

well I think you are half right.. I judge people who go and riot and loot but there is NO WAY I would ever judge someone with a disability

Dilbertian · 04/08/2024 09:28

Your dh is a gem.

Your frenemy is a - I cannot bring myself to say what I think of her, even if she is suffering from her infertility. You owe her nothing.

Idiots judge, yes. Idiots who know nothing about disability and have not the imagination nor compassion to put themselves in another's shoes for a few minutes. You are not responsible for their prejudices, nor for the idiocy that they spout as a result of their prejudice. That's their problem, not yours.

People who matter to you will not judge you for something you cannot change.

(((Hugs)))

Readingallthetime · 04/08/2024 09:28

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🙄🙄 You're a troll aren't you.

Lose6pounds · 04/08/2024 09:25

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WingsofRain · 04/08/2024 09:24

Rachie1973 · 04/08/2024 08:39

Absolutely this!

My DH has Multiple Myeloma. He’s in remission at the moment but it’s incurable and he will relapse. When it was discovered he had 5 broken vertebrae and could not walk, sit etc. The idea of making him work is awful! His pain levels are different daily and quite honestly I’d prefer his energy to be used in fighting the disease rather than taking ‘zoom calls’.

I had to quit work to look after him and the kids. If people judge us as lazy. I would laugh in their face.

The post for someone that works for a charity is quite frankly an embarrassment to her and yes, I judge it.

Yes, I agree. I’m very shocked that any charity would employ someone who is prepared to voice attitudes like this in public, doubly so if it’s disability related.

I can’t understand how someone who claims to be disabled could be so hateful to another, so I’m telling myself that that PP is making her job and disability up, I need to keep some faith in humanity.

To the OP I’d say you are managing brilliantly, looking after your child and having a good life - keep at it. Also you husband is an absolute gem!

Ifyouinsistthen · 04/08/2024 09:24

Your DH is 100% correct.

Mongrelsrbeautiful · 04/08/2024 09:18

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What a horrible post. I truly hope you do not have direct contact with vulnerable users of your charity.

Scottishskifun · 04/08/2024 09:15

OP your husband is right the majority of friends will not be thinking this do not give it a second more of your head space. She is a nasty piece of work!

Nobody knows what it's like to deal with your conditions other then other people with your condition. I would not view you as lazy!

As for the pp about London trip your just showing lack of understanding on conditions and pacing methods that people with long term conditions do day in day out.

Readingallthetime · 04/08/2024 09:13

Lose6pounds · 04/08/2024 09:01

@Ponoka7 i read in the neurologist Suzanne O Sullivan’s book that roughly 25% of seizures are psychosomatic in nature

Have you ever had a seizure?

If 'no' then you need to f**k off immediately because you should be ashamed of yourself.

If 'yes' then I have no idea what to say.

Whether they're caused by a neurological disorder, or more rarely by severe psychological trauma, seizures are debilitating. Let alone adding OP's pain and exhaustion from fibromyalgia on top.

Member984815 · 04/08/2024 09:12

Your husband sounds so nice and supportive, your so called friend sounds like a jealous person , you have the child she longs for despite your bad health , the big house and all the money in the world won't fill the hole . I wouldn't give her another thought and I wouldn't entertain her again .

Readingallthetime · 04/08/2024 09:07

Bs0u416d · 04/08/2024 07:54

You have 20 seizures a week, and you were able to go to London, for the weekend? That is an average of 3 per day. Perhaps your friends feel you're over egging things if over that weekend, you didnt have any?

You're a really mean person.

dizzydizzydizzy · 04/08/2024 09:07

Your DH sounds brilliant! Agree with everything he's said and done. Please can I borrow him for a while? I'm on my own and could do with an occasional bit of support.

Long term illness is difficult. I'm in a similar although not quite so serious boat. I have been off work due ito illness for 5 months so far. It plays on your mind. It doesn't help that a close friend seems to have dumped me .no idea why.

Differentstarts · 04/08/2024 09:06

Your story sounds similar to mine, not the same medical conditions but the sleeping, the pain and the days needed for recovery. The problem is people outside your immediate family see you at your best, they don't see what's happening behind the scenes and unless they've experienced it they don't get it. This is why I always get annoyed at people who say comments like my sister is on pip but theirs nothing wrong with her. Your friend sounds like a bitch and has clearly had a blessed life if she can't understand the reality of your situation. I'm glad you have such a supportive husband, people like that are who matter and who you should focus on. I wish you all the best for your future.