Embarrassed by a wheelchair

NSM

I am in my 30s. I have spastic diplegia. Like lots of others here, my mobility is getting worse. I am thinking about trading up to a wheelchair or a scooter. The thing is I can't discuss this with my husband. He finds the whole thing distasteful. I have started using shopmobility, but he feels awkward about pushing me in a wheelchair. I think he is embarrassed.

My question is I suppose is this normal or reasonable?

Elizabeth

Hi NSM,
I'm in my late 20s. I had a similar experience with a long-term boyfriend when I started using a mobility aid (walking stick, then later crutches) for balance and to improve my stamina. On a number of occasions he asked me to leave my walking stick in the car, and started calling me "hopalong" and similar hurtful nicknames. He expressed, on a number of occasions, how he felt cheated out of the able-bodied girlfriend he'd first gone out with, and I felt as if his self-esteem was affected by being seen with me - as if somehow his attractiveness was being called into question because he couldn't date someone able-bodied.

So I think, in answer to your question, it is a normal emotional response to seeing a partner experience increasing impairment. However, I don't think it's reasonable that he's embarrassed of an illness neither of you chose to have, and about which their should be no shame. Nor that it makes you feel uncomfortable about using the mobility aids that you need.

For me, my boyfriend's self-esteem issues, desire for a "status girlfriend" and need for control resulted in behaviours which adversely affected my emotional and physical wellbeing, causing the relationship to break up.

But in a marriage, you have a lifelong commitment to each other - so work on it! It may be that counselling, either together or apart, can reveal the underlying feelings that are causing him to react in this way. He may be grieving for the life you'd anticipated together that's now going to be different. He might be scared, or feel unsure about wheelchairs. He might hate the patronising looks that you will both be getting in public. He might just miss holding your hand walking down the street.

For me, starting to use a wheelchair part-time has opened up social opportunities that I had to turn down while using crutches, and has given me more stamina and confidence. It helps that I invested in a chair that looks stylish, rather than a clunky NHS one - it's also far lighter so I can self-propel over short distances. Perhaps when your husband can see some of the advantages, he'll be more positive about it.

Good luck!

Noah

Sometimes we have to swallow our pride and not worry about what other people around us think. Its about doing the right thing for you, so that you are not in as much pain that maters the most.

You can go further together, see more, without as many limits that poor mobility brings.

I use a chair on a part-time bases and find that having a cool looking chair helps, self propelling is a must for me to. I also have my stick holder on the back so then, its best of both worlds as I can still carry my sticks everywhere, and when I'm walking using my sticks, I normally have friends queing up wanting to have a go in my chair!!

Using my chair is still something I'm very self conscious about, but it is getting easier, and it helps loads to preserve my energy, and not being in constant pain makes social times so much more enjoyable.

niceboots

I agree with Noah, We have to do what's best for us....
Recently I started using a stick when I knew I was going to be doing a lot of walking, to help with stamina and reduce the strain that walking puts on my body. It's not a decision I took lightly and frankly I resisted for a long time, until close friends basically told me not to be so stubborn and do what's best for me.
To begin with I was very self conscious as I felt it made me look more disabled, and I felt like people were giving me pitying looks. Eventually I got used to it, and like all things cp related (like my splints) it has just become part of every day life, almost a part of me. It often becomes a source of jokes, such as when people get in the way when I'm walking and I wish I have a tazer on the end so I can 'take them out'!! I've found that customising my aids helps, I have been customising my splints with stickers and graphics since an early age, an idea that my parents came up with when I first started wearing them as a child to get me to wear them.

I know in the future it's inevitable that I'm going to need to use a wheelchair or scooter and like the stick, I'm going to be resistant to in the beginning, but I'll eventually get used to the idea, and have already decided that if I get a scooter, it's going to be customized to the max! with a sporty paint job, chrome accessories and mirrors!!! (think mod scooter... like in Quadprophenia!!!)

milo

We've faced a similar decision in the past year when I had to start using a wheelchair. In my case, my partner was perfectly happy to push me but I initially felt awkward with it. This was partly because when we met, I was able to walk and I was worried how she would feel about having a wheelchair bound partner. As it turned out, if anything, it strengthened our relationship. I don't about your physical ability, but if your husband is uncomfortable pushing you, it may be worth considering either a powerchair or a lightweight chair so that you're self mobile. I'm fortunate in having good arm strength and have just bought an ultra lightweight chair which is incredibly easy to push. The problem now is that my partner has to jog to keep up with me.

NSM

Thanks all. It's good to talk.
Independence is the thing. I am looking for a lightweight scooter I can handle myself now. It took him 6 months to stop moaning about my stairlift so we shall see

milo

It's not always easy to make the choice to use mobility aids. In my case, I felt initially that I was losing something or giving in. It took a while but I now realise that I actually feel safer and more mobile than I did before I had the chair and stair lift etc. It also feels great to have independence back. Hope it works out well for you.

Noah

Maybe try and go to some mobility/disability shows or exhibitions together, to see what is possible. The paralympics are great example of how anything is possible with the right support, adaptation or aid, and it can look cool and individual to.

milo

Noah, re your last post. Where are the disability exhibitions advertised as i'd like to go to one?

Noah

I normally look on Google! But have also found some to be advertised in the "able" magazine. I have just started a new thread on the forum, as feel it would be worth trying to compile a list of Disability exhibitions that are coming up.

Thanks Milo.

SarahP

I think sadly this is a 'normal' reaction but I certainly don't think it is 'reasonable' - or not from a spouse. I thought marriage was supposed to be about in sickness and in health, loving and supporting each other in the difficult times, not being 'embarrassed' by a partner who needs help. If it took him '6 months to stop moaning about' a stair lift then this seems to me to quite clearly be his problem, nothing to do with finding a wheelchair hard to push or wanting to hold you hand. I think you need to ask him straight up what his problem is. Why doesn't he want things to be easier for you? I have had this kind of attitude from a few (able bodied) partners and sadly I think it is about their embarrassment and awkwardness around disability. Accepting obvious signs of the disability, such as wheelchairs or other mobility aids is something they find hard to handle. But you can't make your life harder to save their feelings.

Denny

Hopefully, MSN within a few weeks of having wheelchair or a scooter your husband will see that actually that loads of people used them. Sounds silly but once my husband got his scooter we kept passing people using scooters and as it is so common nowadays, nobody bats an eyelid. You and him will be able to go out and about more 'cos you won't be so tired. But more important, by riding around you are taking the stain off which means your body will be less painful and you will be able to walk at home for longer.

NSM

Thank you all. It has been a real help to have someone to listen

Denny

Let us know how it goes? Denny

nxh190

Thank you for your insight into some of your experiences. I am writing an assignment for a NHS leadership course and would like to use a quote from NSM and Noah to show there are emotional responses of using a wheelchair from both the wheelchair users perspective and their relatives. I cant see a way to message you. The assignment will not be published openly and will only be viewed by the tutors of the course. Would you have any aversion to me using your comments? Thanks.

Noah

Yes - I'm happy for you use any of my quotes for the purpose you have outlined.

Hope the assignment is a success and you get the outcome you are looking for.

Kind regards


Noah

NSM

Fine by me too. Happy to help. As a postscript he only came round to my needing additional aids after we got divorced

Noah

Sorry to hear your marriage has ended in divorce. I hope you are getting the help and support you need. Some people find going to a professional counselor can be helpful for finding new ways of coping. Your GP is a good person to speak to and can arrange a referral.

Feel free to ask any questions on the forum or call the Scope helpline on 0808 8003333. A very helpful team of advisors and it's in complete confidence.

Take care


Noah

nxh190

Thank you both.