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.

I am astounded that someone who says that they work for a national disability charity can be so cruel and ignorant and judgemental about people in council housing.

Conditions can vary vastly from person to person. The OP has severe epilepsy and fibromyalgia. Both of these conditions can require a lot of rest to recover from flare ups. It is so unpredictable that there wouldn't be many suitable jobs that could be done in the odd few hours when she is feeling ok. Besides this she needs to be as good as she can be for her young child. She has her priorities right.

In the long term maybe her epilepsy will become more controlled and her fibromyalgia will flare up less often enabling her to consider getting a suitable job. Being pressured to do it now would probably set her back even more.

You are not well enough to work. Some people may judge you, but those are people who don't understand your condition and the implications on your health. Try not to fret about them - what can you do?

Ad for the "friend" your DH is awesome and 100% right about her. What a bitter, jealous, toxic BITCH.

I’m concerned about all the “my husband says” remarks, though. Can you not think for yourself, on any topic?

Cleaners childminders and nurseries cost money.

Money that the OP may not have.

I also do not work for medical reasons. I worked for 20 years but after a severe accident I am now not able.

Some people are not able to work. That is the way it is.

There are people who don't have much experience of disability who are happy to
Say that anyone who doesn't work is lazy.

I'm surprised to see someone who has significant disability experience call a disabled person lazy for not working.

Don't lose any more sleep over her. She really isn't worth it. I've been unable to work for health reasons a couple of times in my life. I don't think the decent people do judge this negatively. And yes, your husband is great. Definitely give him the Mumsnet Good Bloke Award from us.

People who say things like that are unhappy with their lives. Ignore her and you do you.

I can hardly believe such utter nastiness came out of the mouth of a guest in your home! What gave her the right to deliver such foul comments🤷🏻‍♀️. And she in her arrogance thought you needed to hear what she had to say. I’ve never heard anything approaching this lack of civility.

Try and focus past this incident, how lovely your husband is so supportive.

If I knew you I’d recognise that you have two significant health conditions that place restrictions on what you can do. (Because I’m not an ignorant idiot like your friend).
Regarding the London trip, I’d be glad you managed to get there. I’d feel sorry for you that you couldn’t do more and had to stay at the hotel. But I’d totally understand why.

It’s fantastic that you have managed to find a job that works for you and allows you to balance your needs.

I would hope someone who works for a disability charity is also aware that everyone is different - just because one person can work doesn’t mean everyone can.

Also worth noting that there arent an infinite amount of jobs that let you work when you can from your bed!

What you should take from this is how bloody lovely your husband is.
Forget about her and her "everyone" judges you. Some people are stupid enough to envy those who can't work because of disabilities. Too stupid to realise that life isn't a picnic and given the choice, you'd rather lose your medical conditions and be able to work.
You are well rid of her and daft opinions!

She's a complete bitch. I wonder how long she would last having to live your life? Forget about her. You've got a keeper of a husband, though. How refreshing.

She was incredibly cruel. One of the hardest things I had to deal with was that the "bright successful future" working hard and full time that was envisaged when I was younger was snatched from me as I was on the path.

All of this. People need to mind their own!

Your dh is right and you are right he is a keeper. Real friends support you no matter what. You better without her. I've a friend with fibo and I pop to see her when she's got good days. When she's got bad day I text her funny things I know make her laugh. She kind, funny and been supportive of me in other ways. Fibo is awful and of top of the epilepsy you going through a hard time. Have you asked for a medication review at the gp to try and control the epilepsy Abit better (we've a family member with epilepsy).

Blimey, there is a lot of bitchiness around at the moment! What with the one you encountered and the gym bitch (on another post), they must be very unhappy people.

Eh, who gives a toss what she thinks, opinions are like arseholes- everyone has one.

Never ever allow someone to plant a negative thought like that in your mind, dont water it and feed it. This is about her and her small mindedness. Dig it up and toss it on the compost heap.

She doesnt speak for everyone as this thread has shown OP - you're fine x

Pity the people who have to put up with this friend as you don’t have to any more.
I totally get your situation, mine is similar in that I can no longer work in the traditional sense due to long term conditions. It took me a long time to get used to the fact as before I became ill I saw myself as a high-flyer. So it was my ego that was hurt as well - giving up my lovely home to move back into my teenage bedroom was an absolute joy…
I do know this - the friends I lost who judged me are long gone. My DH proposed to me knowing me as I am now. He works FT, I am at home and like you I try to keep in top of the house. My old life meant a good day if I got a promotion. Now it’s if I’ve managed to clean the bathroom. Like you, if we do manage to get a break I am often in the hotel room.
It is not what I wanted for myself, I’m lucky in that I do a bit of WFH when I can. I have a few wonderful friends who absolutely support me. And I’ve realised in life that’s all you need.
As for your friend I hope nothing happens to her health and she’s left wondering if people are talking about her.
And she’s lying by telling you ‘people’ are talking. If friends know of your conditions as you’ve explained to posters on here, they will absolutely understand.
She was just being vile and I’m thrilled your DH literally showed her the door.
I am so sorry your body goes through so much every day. However, the less stress you have the better. Having a few key people in your life who love you means you are doing very well indeed.
Who cares what you were meant to be at school? Saying that at least your ‘friend’ has been consistent - horrible then, and even worse now!

It is so hard coping with your epilepsy and fibro already, you don't need vile people like that in yojr life. I hope she's at home feeling ashamed of what she said and your DH is amazing the way he defended you (I'd be extremely proud of him). I think when tou have a long term condition you do feel judged I definitely do I have a condition where some days I need my stick others I can walk ok (but painfully) I feel like everytime I leave the house with or without my stick I'm being judged but in reality I doubt anyone really takes much notice at all it's just how makes me.feel.

Your DH did absolutely the right thing.

Her comments say a lot about her. Is she jealous you have a DC and a fabulous, supportive DH?

Sadly, I fear something will befall her and she'll understand ill health very soon. I'm not wishing it on her, but I find this happens when people are that oddly outspoken about something they don't understand or appreciate.

I do hope you are taking hemp cbd capsules, they help reduce the pain my step daughter suffers due to fibro.

Apologies I have no exp with epilepsy. Maybe someone could suggest a good supplement that may help.

Do not fret about what others think they have zero idea what youre going through.

I hope the seizures reduce, stress will only add to your illheath so sending positive energy your way x

What your friend said wasn’t nice but of course people judge others for all kinds of things - their house, the area they live, how they parent, their job and especially not working as it’s frowned upon. Fibromyalgia has psychological causes so is probably judged more than other disabilities because of that sadly. I think encouraging you to work towards going back to work and wanting you to fulfil your potential is valid. However your friend should be doing that in a supportive way, not bringing you down.

Sadly everyone judges .in my role ww have to do a 2 day subconscious bias course to help us realise and manage it.
What was she expecting you to do with the information?

@Lose6pounds you think that epilepsy is a psychosomatic disorder?
@thelonelyones the OP has 20 seizures a week, there's no way to make reasonable adjustments around those. Being a wheelchair user, having cancer etc doesn't really compare. You can use childminders etc but why would you go to work to spend all your wages on outside help, while having no quality of life and it being incredibly damaging to your child? The DH would have to do even more and working would take everything, so no relationship would happen. I don't know what you do but you shouldn't be advising people who have epilepsy. There are conditions that you can't work around and that's why disability benefits were introduced. Do you think that you can function while having a seizure and immediately after?

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?

It being an average of 3 a day doesn't mean that everyday someone will have seizures everyday.