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

[Redgreenfroggy]

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.

Do you not think it's horrifying that we expect people with disabilities to work in bed rather than supporting them adequately in this country? I assume this is something your employer campaigns on!

I guess that was kind of my point. Presenting as relatively well whilst with her friends is likely to skew their opinions when op reports that she is debilitated for much of the time.

LOL at the poster who thinks epilepsy is psychosomatic.

Interesting that the nasty bitch could not name one person who agreed with her. That’s because there isn’t any. She’s the one doing the judging, and if she ever experienced a seizure she’d change her mind sharpish.

Good on your DH for not putting up with her bullshit. Don’t dwell on what she said, she simply wanted to hurt you. There was no friendship in her, in the bin she goes.

Sorry didn’t read full thread and that’s not a friend! Your husband did/does your proud.

He sounds very special.

And I don't believe anyone with any empathy judges someone e we it’s a serious and life threatening condition like epilepsy. It is perfectly acceptable to be a stay at home mum, with it without epilepsy. You are right to focus on the people who love and support you.

She does sound quite intensely nasty.

She presents as relatively well because she manages her condition by resting for the day and a half, while others enjoyed themselves and finishing the night early. Compared to people her own age, she is debilitated. I could say that if she threw work into the mix, then the trip wouldn't have happened because she'd be using leave to rest. But no employer will work around seizures. Their occupational health would insist on terminating the employment.

These threads always show that most people don't have a clue on living with chronic conditions. There are enough documentaries and personal stories about that it is easy to educate yourself.

Anyone who truly knows and cares for you will not judge because you are obviously in a difficult position health wise, plus it's nobody's business whether one partner stays at home out of choice! I also have fibromyalgia and it flares with stress in particular, i manage it partly by work only part time despite my kids being adults.

I wasn't judging or being goady. Just putting across a point of view.

What an awful friend! So glad you are cutting her loose. One of my very close friends has epilepsy and doesn't work but I don't judge, if it's easier for her not to work then so be it, we have other things in common aside from work. Your hubby sounds amazing, what a guy! I can only dream that my DP would defend me like that if he ever had to.

You and your DH sound like a brilliant team. I think your life will be much better without that woman in it.

Also it will free up space for nicer friends.

I judge you to have a quality husband and excellent decision making skills. She sounds like she has found to her cost that the big house doesn’t count for much if you don’t like your life.

Where are these work from home jobs with no experience? I'm also sure those jobs have fixed hours too and you couldn't just work when you can?

You have a great husband. And you're very wise for putting your health and wellness first by stopping work. No job is worth that. Well done for having the clarity to realise that. Your 'friend' is deeply unpleasant, as is anyone who holds those views. Don't live your life guessing what other people think though, just get on with your own life and if peoples nasty opinions come to the surface than show them the door.

Your ‘friend’ sounds awful and probably jealous of the fact you have a child, however your husband sounds great.

It’s really, really hard to live with fear of others’/societal judgment. I’m sorry you didn’t sleep last night, I hope you can rest today and that it doesn’t make you ill. Can you look for a counsellor or therapist? Expensive but you’re worth it if you can find the money. And/or the book a pp mentioned, talking to your real friends and your husband. To try to let go of others’ opinions.

You know you’re doing your best, that’s all that matters. You also have a solid wanker-filter: if you had the job and big house this awful woman might not have revealed her awfulness and you might still be hanging out with her.

i’ve a friend and a family member who can’t work: I wish they were well. I’m glad they don’t have to work on top of all their pain and disabilities, though I wish they had the option of something really flexible and very part time and interesting to give them another dimension to life and more money, but I don’t value them based on their ability or lack of to do paid work. One of them is a mum too, and she gives her all to that, which is work too, even if most of us are lucky to have capacity for paid work on top.

Wishing you a good laugh very soon with your real friends, OP, and a good day with your husband and child, and the strength to shrug off others’ opinions. 💐

Your husband sounds amazing 🥇And you sound like a Warrior Queen. Drop the haters from your life. Xx

Thelonelyones
Your post is appalling.
As someone who works for a disability charity, you really should know that if you've met one disabled person, you've met one disabled person.

To everyone living in social housing, there is absolutely nothing wrong with this.
OP, you sound like you have made some very wise choices in your life, your DH being one of them.

Why does she have to work though? If they’re comfy as a family and it helps manage her conditions who are you to decide she should work.

Sanctimonious claptrap.

Don't you dare let her take up any more of your head space. She's not worth it.

Your DH is a diamond, and you can tell him everyone on this thread thinks so.

My best friend has ME. She hasn't been able to work for years. I watch her carefully manage her energy so she can live some sort of life and ensure she leaves the house 4 days out of 7. I wish I could take it away from her, but I can't. I certainly don't judge her. I do what I can to show understanding and try to make her life a little better.

I'm certain your actual friends will be doing the same for you.

That is the nastiest, most sanctimonious post I’ve ever read on MN. You do realise that there are different levels of disability? Nobody would employ someone like me when it takes me five times longer to do anything than an able-bodied person, and frankly I don’t blame them! My neurological problems would mean any work would be littered with mistakes. I worked 80 hours a week for years running my own business until I became ill, while raising 3 kids. I am not lazy. Now I can’t work. I struggle to just get through each day, and that’s with carers. Do you think terminally ill people should be forced to work from their death beds? Are they just ‘lazy’?

You're worrying over nothing.

This woman is clearly jealous over you having a child and had said all this just to deliberately wind you up. She couldn't even name anyone else that thought the same!

Ignore her and carry on with life. Your DH sounds lovely.

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.

We all judge people all the time - but I'd bet there are more people judging that woman as a bitch that judging you unkindly. Most people would feel sympathy.

She's very very cruel and absolutely not a friend.

People with epilepsy have one of the lowest employment rates ( can't find the official statistics), because it is a condition which can be really hard to work with.

Absolutely focus on doing what is right for you, and ignore her