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We want to hear from you: please tell us about your experience of the online community.

Has your partner ever been mistaken for your carer?

Pippa_Alumni

We're talking about sex and relationships this week. Wheelchair user Jasmine recently shared her story in the media, about how her boyfriend can be mistaken for her carer.

She explained: ‘People are constantly calling Alex a hero, or telling him it’s great he can “see past” my wheelchair.

‘I know they mean well, but I find it patronising, and it erases my experiences. We both know I’m disabled – we can’t pretend otherwise – but I’m still me.

You can read the rest of the piece here. Can you relate to Jasmine's experiences? Share your thoughts in the comments below!

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Comments

Sam_Alumni

My husband is a massive support to me and I love him dearly for it, but often other people tell him he is a hero. I know they are trying to be nice, but what I hear is "Well done you for having to put up with her" and it is quite hurtful.

Ghost4287

Hi Sam, I understand what you mean as people say it all the time. I hear what you hear, with regards to oh well you put up with her but you could find one that isn't broken.

Topkitten

When all my problems started I pushed my partner away in such a manner that it destroyed the relationship and she moved out. I have never regretted my decision because she would have never coped with what I have become. Since 2005 I have had a few ladies make varying plays to become part of my life but I rebuffed them all. There is absolutely no way I would drag someone down with me, especially someone I loved. There are times when the loneliness intrudes and I make half-hearted attempts to resolve the feelings but I soon regain my common sense and let it drop.

Is it harsh? Yes, I suppose it is to most people but living alone does have some benefits. As I said, I have never regretted my decision, not even when the loneliness does happen.

For those that think this is a bad choice then let me explain something......

I suffer spinal degeneration in a way that no one, not doctors, orthopaedics nor pain clinics have ever experienced. It is progressive and extremely painful, so much so that I can barely walk after 13 years since it was diagnosed. I am only 62 so can expect to spend many years getting worse every 2-3 months. Every lady that has shown interest has always held the opinion that there is some reasonable solution. There isn't. I have tried so hard to find anything that I have alienated many doctors and surgeries and even the pain clinic and orthopaedics. Now I get little or no support and probably never will. There is no potential solution and soon I will be bed-bound. It could easily destroy someone that loved me and it's hard enough on my family, let alone getting someone else involved.

TK

Richard_Scope

My wife has often been mistaken for a carer or asked by other men "Do you want a real man?" That comment has got me into trouble on a few occasions.

AlexandriaUK

It's funny but I have been unable to walk independently for nearly 3 years and whether it's because I'm strong willed and refuse to appear"disabled" or whether it's because i have a good friends base I have never had any issues with comments being made regarding my inability to walk.
I have my partner of many years as my carer but I do know he has never been asked if he's ok with it or any one has ever commented about me in a degrading way, I have quite a few friends who are also unable to do everything for themselves and they have been having no problem with people looking down on them.
Yes obviously people will possibly know my partner is my carer, why wouldn't they, if we love each other and I was able bodied and he was incapacitated I would definitely want to care for him.
Also if I ever came across someone who I felt was patronising me I would in a polite but firm way make sure they didn't do it again.
Being unable to walk does not make me lose my voice.
Im sorry that others live in environments that have this type of uneducated people in them, it's sad that their are still people like this still.

David45

I totally agree with Alexandria, people need to be put in their place firmly but always politely

elizabethr

Hi all
I'm reading this discussion with interest. I have never had people/outsiders interested or comment on our disabilities. When I say our it's because we now both have chronic health conditions and to a certain extent we are both carers. Unfortunately we had only been married 12 months and together 2 when my husband started with a progressively deteriorating pain condition which has now brought a whole load of other issues mentally and physically. I had to fight to get his diagnosis and fight for financial help at the same time as have 2 young children and being the main earner with a stressful job. The stress on me was never truly appreciated until I was diagnosed with crohns/ME CFS/Fybromialgia. It was always poor "hubby". Over the years we have separated 3 times due to the stress and each time got back together.

All during this time people on the periphary would judge me as being unsupportive but for me it's like being married but not really having a partner to share things with. So whereas we have not had derogatory comments about being a carer it was always comments about not wanting to be a carer.

Needless to say I ditched all the "friends" that were only really acquaintances (if they were true friends they wouldn't have offered the opinions they did. I now have a very tight knit group of friends who know our situation and whilst they do empathise with my husband they also understand things from my point of view.

elizabethr

Sorry all for the long post .

DetestingWP

This is so unfortunate, but there was something I wanted to know - having read the write-up by a Hattie, which reads "A disabled woman has slammed ‘ignorant’ strangers who mistake her.." - can I just ask if those were the exact words you used, Jasmine - if you are here, or to anybody else who might know. Thank you.

daz1

On one occasion I was with my wife in a pub & while I went to the bar someone asked her if she was my carer. Another time someone said to her how nice my wife is for taking me out for the day.

Pippa_Alumni

Hi @DetestingWP, Jasmine is not on the community but is a friend of mine. On her social media she's since clarified that she didn't come up with or approve the headline herself. Hope that somewhat helps!

cookingbeatz

On the contrary. My disability is unnoticeable at a glance; mistaken for a drunk at best! My wife and I get stared for parking in blue badge holder bays until, on the occasional approach, I clarify that I have Cerabral Palsy. It is due to my shear determination and wilfulness in not giving in to my disability that perhaps I have done myself and my wife a disservice. I joke that I am a typical man for good reason. I am no good in the kitchen where fine-motor skills are a must if you don’t want to end up in a&e with third degree burns! As such my wonderful wife is expected to hold down a full time job, be a mother to our son and be a carer for me with little recognition by the state. We also have to rely on “social capital” to do the school run as I am unable to drive and my wife is at work.

whilst we might be privileged in people not judging us as having a ‘service user / carer’ relationship, the lack of government recognition does take its toll. The grass is not necessarily any greener!

jamieknight

I am autistic and I have limited speech. I am also a senior research engineer at the BBC.

Often people confuse my difficulty communicating or moving around, as a difficulty with understanding. Occasionally people say unhelpful things on the assumption that I do not understand them.

My friends do some degree of support with communication, but they see it as just part of being friends. They are other engineers / professionals in the same industry as me.

Other people have assumed my friends are paid carers or are only friends with me due to some other reason (community service etc).

Occasionally, friends have met me after work when they have been in suits, and people have assumed one of my friends is my dad! (he's only ~5 years older than me!)

Grumpy1954

My wife and I both have problems and are officially each other's carers. She has to help me with my lower half, I have to help her with her top half. I don't actually care what other people think or say, they don't know us, our situation or our lives.
I have no problem with doing so, and, when I was worrying about dementia etc and told her if the time came I didn't know her or was abusive I wanted her to find me a care home and move on, she firmly told me she married me for better or worse and on no account would she do any such thing.

elizabethr

Grumpy1954
Your post is both realistic and compassionate

YorkshireLass01

Topkitten said:

When all my problems started I pushed my partner away in such a manner that it destroyed the relationship and she moved out. I have never regretted my decision because she would have never coped with what I have become. Since 2005 I have had a few ladies make varying plays to become part of my life but I rebuffed them all. There is absolutely no way I would drag someone down with me, especially someone I loved. There are times when the loneliness intrudes and I make half-hearted attempts to resolve the feelings but I soon regain my common sense and let it drop.

Is it harsh? Yes, I suppose it is to most people but living alone does have some benefits. As I said, I have never regretted my decision, not even when the loneliness does happen.

For those that think this is a bad choice then let me explain something......

I suffer spinal degeneration in a way that no one, not doctors, orthopaedics nor pain clinics have ever experienced. It is progressive and extremely painful, so much so that I can barely walk after 13 years since it was diagnosed. I am only 62 so can expect to spend many years getting worse every 2-3 months. Every lady that has shown interest has always held the opinion that there is some reasonable solution. There isn't. I have tried so hard to find anything that I have alienated many doctors and surgeries and even the pain clinic and orthopaedics. Now I get little or no support and probably never will. There is no potential solution and soon I will be bed-bound. It could easily destroy someone that loved me and it's hard enough on my family, let alone getting someone else involved.

TK

I too suffer with degenerative disc disease, spondylitis, osteoarthritis in my spine, as well as osteoarthritis almost everywhere else and of course fibromyalgia. I say of course, because it seems to be something that the medical profession give out like lollipops to people with chronic pain. Anyway, your sentence "no one, not doctors, orthopaedics nor pain clinics have ever experienced." made me smile… My medical file reads "Has the severest form of degenerative disc disease I have ever seen in a woman her age" (I was 34 at the time), but no-one has ever said it to me, just written it on my file.
I am 59, I know I am worsening with each passing month, but I refuse to give in and I have a man in my life who is absolutely wonderful, he takes each problem in his stride and doesn't think of himself as my carer, merely caring about me and doing all he can to make life as normal as possible with me. I refuse to give in to it, I will not use a wheelchair, not until I am absolutely unable to put one foot in front of the other and I absolutely will never give in to the point where I am bed bound. It will not beat me, I think that attitude is what keeps me going!

YorkshireLass01

I have never, ever been asked if my daughter is my carer, even though she is, how very rude of someone to do that!