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Embarrassed by a wheelchair

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?
My question is I suppose is this normal or reasonable?
Replies
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!
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.
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!!!)
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
Thanks Milo.
Hope the assignment is a success and you get the outcome you are looking for.
Kind regards
Noah
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