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.

thelonelyones

If you work for a disability charity, you should know that it is impossible to say what work a person can do, without full knowledge of how their medical conditions affect them. Also an understanding of how the demands of work differ, for example, from a bit of time out and about with DH and DS where she can opt out if she has to, has support if she has a seizure, can go at her own pace, have extra rest in preparation and afterwards, etc

I do hope you’re not in an advice role.

I'm sorry to hear this OP. She sounds like a nasty piece of work. Unfortunately, some people do judge but on the same vein there are lots people who are kind and thoughtful.

I’m sorry you went through that OP, she was very cruel. Yes it could be rooted in her infertility but that is no excuse.

One of my friends was diagnosed with CFS a few years ago. It taught me a lot about managing chronic conditions that I didn’t get before. I’m sure she gets judged, but most people don’t see the whole picture. We can do a fun day or weekend out - but she has to manage her energy so she will have done very little in the week before, and planned things around the expectation of being bed bound for a few days afterwards. But all people on the outside see is her laughing on the good day.

Sounds like you have a DH who gets it. That is excellent. Make sure you work on your own self esteem though, you can stand up for yourself without him too. The people who judge are not people you need in your life. Stay home and look after your child, he needs two loving parents, not a big fancy house.

I'm disabled and don't work. If I were to declare my many chronic conditions and required adjustments to an employer, nobody would touch me with a barge pole. I wouldn't be a reliable or capable employee due to my disability. Anyone who judges me would be told in no uncertain terms where to go. Op you are doing the best you can, working or not doesn't define you. Screw what anyone else thinks !

She's not your friend. No one worth your time will be judging you. Your husband is awesome.

She's an ableist twat and you should pay her no mind.

You're a disabled woman. She doesn't want to understand that.

You have a lovely family including a supportive husband.

We are not valued by having paid employment. As Maya Angelou said "you alone are enough".

I have epilepsy. I also have chronic regional pain syndrome which is similar to fibromyalgia. My son has cerebral palsy and I am his carer. My life is pretty exhausting.

The difference is that my epilepsy is controlled. My pain condition is horrible and totally draining, but I seriously don't have to cope with anywhere near as much as you, because seizures are so, so debilitating. I think you are amazing. Benefits such as PIP are literally there to support people like you. You deserve it. Isn't it wonderful that we live in a society that wants to use its strengths to help people.

Anyone who judges you is jealous, because they are quite frankly stupid, and can't imagine how draining epilepsy and fibromyalgia can be. They are especially jealous that you have such a supportive husband. Seriously f**k them, give your husband a big hug and enjoy your life the way you deserve.

thelonelyones, I cannot find your original. I think it a disgrace that you work for a disability charity. I hope someone works out who you work for and reports you. I have have disabilities and work but wouldn't expect everybody else too. I think it would be extremely difficult for a person with seizures to find and maintain employments.

Good on your DH for shutting the door on her. Yes, she might be sad about infertility but no need to take that out on others.
I was “lucky” being diagnosed with fibro and CFS in my 50s, after I’d taken early retirement for other reasons. There’s a lot of ignorance about the conditions even from health care professionals who can also judge ime.
Concentrate on yourself, all the nutrition, all the pacing, I found it took years to get where I am now and I don’t gave epilepsy thrown in, I can’t begin to imagine how many complications that adds in. Forget others and their judgmental attitudes, concentrate on you and your family.

Sounds like your husband is a keeper.

She was rude and she showed how little she understands your chronic illness.

Please don't let one persons ill informed opinion make you doubt everyone else.

Your husband is a legend, his reaction to hearing her crap was spot on.

She is not a friend and was being incredibly nasty. Ditch her.

I’m retired now but had my own business in the Disability Confident scheme. Please ignore this horrible woman and the one negative poster on this thread. They clearly have no understanding or empathy.

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

What a cow. She is probably jealous of your lovely supportive husband.

Thank god no child has to have her for a mother!

What a bitch seizures are exhausting. I remember one paramedic said to me when DD started having seizures. The exhaustion they feel after having a tonic clonic is equivalent to running a marathon. Some people are just ignorant.

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.

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.

You're a really mean person.

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 .

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.

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.

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

Your DH is 100% correct.

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!