Sometimes I have to use a walking stick. I walk with a stick because sometimes the pain is too much to put weight on my legs, or my muscles are too weak to hold me up, or I am too dizzy and lack the balance to remain upright. I especially need the stick when I am standing still as without it I can fall over due to all of the above.
I hate my walking stick.
I hate it because it is awkward to use.
I hate it because it prevents me carrying anything with that hand.
I hate it because it stops me holding hands with my wife.
I hate it because it is noisy on the pavement.
I hate it because it allows me to walk further when I should stop and rest.
I hate it because it transfers the pain from my legs to my hands and arms and back.
But most of all, I hate my walking stick because it is a symbol of my weakness. It is a sign to anyone that sees it that I am sick. Weak. I feel self-conscious when I use it, because people look at the stick and judge me. Many of them see a thirty-something man with no visible problems using a walking stick and decide that I don’t need it. Some of them assume that I use a stick in order to look sick to get benefits. (Even when I wasn’t on benefits.) Some of them actually question my use of it, and in the worst case, verbally attack me, even swearing at me.
So I leave my stick at home. That doesn’t work out so well, because what happens is that I walk all the way to the doctor, the pharmacy or the shops without too much of a problem apart from stopping to lean on a wall every so often. Then comes the problem. I get tired. I get pain. I am out, ten minutes walk from home, rapidly losing the ability to stay upright, and I don’t have a walking stick. Having to ask for a chair and stop for a fifteen minute rest in a shop is even more embarrassing than using a walking stick in the first place.
I have got around the problem of not having my walking stick when I need it by using a folding stick which can fit in the (large) pocket of my trenchcoat or in my bag. It’s still a pain to carry around so I don’t always take it, but it’s better than never taking it. I can also surprise people by pulling the stick out of my pocket suddenly and having it click together in a most satisfying way!
Given my embarrassment at using the stick, you can imagine what I think about using a wheelchair. I’ve never used one but the thought fills me with fear. Fear of what people will think, especially if I get out of it occasionally when I have no need to be in it. People do not understand that health problems are variable and that it is possible to need a stick or a chair on some occasions and not others. Or that I could use a wheelchair for a journey but walk around inside the building at the end of it.
I was thinking about all of this again because I have been offered an electric wheelchair that used to belong to a family member. My immediate response is NO NO NO but actually that is stupid of me. There are many times when it would be useful to have one, and there are plenty of occasions when I could actually use it to get around the house. There are times at the moment where I cannot get from the bed to the bathroom or the kitchen, and so I go without food and drink until someone can arrive and help me. I will soon be living several miles from my nearest helper rather than next door, but with an electric wheelchair I could get food and drink several hours earlier than I would otherwise. I might even get more hours in the day because I would start to feel better earlier.
I have to learn not to be embarrassed to be me.
I agree with all the disadvantages of using a walking stick you have listed. I don’t know about you, but I get pain in my lower back and hip through using a stick and I’m considering going back to 2 crutches.
You say that you’re embarrassed using your stick - consider my embarrassment today when my husband stopped the traffic on a busy A road outside my house, like a traffic police officer, in order for me to be able to cross the road in time to get my bus to the doctors. I wanted the ground to open up and swallow me.
I can’t walk outside without a stick and have used a walking stick or crutches now for the past 19 months. I hate the way it falls and clatters to the ground whenever I lean it against a shop counter e.g at the bank or post office. Each time it happens, it reminds me of my disability.
Use whatever aids you need to, to make your life easier. Life is hard enough being a spoonie.
Hope you find your best solution
Nat
I understand where you are coming from and I feel the same. I always hate the idea of people looking at me and thinking that I don’t look ill. But your body has failed you, and using the wheelchair would be a way for you to start to overcome that and get some freedom back. Forget other people, you need to do what is best for you.
I sympathise & empathise as I rely on my stick often though I hate it for the same reasons that you specify. And, like you, there was a family member who used to use a mobility scooter (rather than wheelchair) & family & friends assumed that I should have no quibbles about using it though I detest it for the same reasons. Though in this case, I feel more vulnerable, weak and believe that I’m susceptible to harsher judgements by the public. I’m also very conscious about being a different height from everybody else if I’m sitting and so feel increasingly self conscious!
there is so much need for education for those in ‘power over us’ in the system and the public. I didn’t like using the wheelchair in tesco, there have been times when I really probably should have tried the instore scooter and I have considered a stick but lately my hands have hurt so much it would be worse than hell. I tend to stay inside a lot, too much. Before I became ill I always made a point of smiling at people in wheelchairs and not talking over their heads, there was a bit of an attitude towards people having health problems but now it has got ridiculous. I hope somehow we can regain ground we were starting to but it has been ever further put back by the fear and hatred stirred this last year. I send hugs to all suffering these dilemmas which are bad enough without all the public humiliations due to lacks of understanding.
Gosh, I recognise this pain and anger and shame! I have been going through a bad flair up this year, and it filled me with anger and despair - at my body, at the way it affects my independence and ability to work, and most of all at the way it affects my young daughter and our life together. It has taken time (and therapy) to come to terms with the facts of my situation, and to achieve some kind of reconciliation with my body. But we have nothing to be ashamed of - we are the same wonderful people we always were! I know it is not a simple proposition, but I want to tell you to use the aids that will improve your life and allow you to be yourself - it is not your responsibility to manage everybody else’s issues and misconceptions.
And this woman has done some interesting research on shame and empathy - http://www.youtube.com/watch?v=qQiFfA7KfF0
*flare* obviously - my freudian slip was showing 😉
Get the damn chair!! That’s an order 🙂
Walk and act confidently, dress eccentrically, and no one should question your walking stick. A certain friend of yours (name witheld) has been doing it for years and I pity anyone who dares to mess with him.
Linda
If it’s the friend I’m thinking of, I remember him doing a stand-up routine about his walking stick. Since that was a decade ago, and I still remember it, that must have left quite an impression on me.
Man! I sympathize with your anger at having to use your stick.
I know how frustrating it is to have to depend on one.
That alone is a pain in the ass.
Don’t! I repeat Don’t! Worry what other people think.
If any one was to give the evil eye for using the stick . Who the Hell are
they?
” For with what judgment ye judge, ye shall be judged: and with what
measure ye mete, it shall be measured to you again”
Remember we are only imortal for a limited time
I could have written that several years ago. Now i use stick and chair as and when with no shame and a big ‘fuck you’ in my head.
I agree - it’s hard. I have a post on my blog about “letting go of symbolism” that is about EXACTLY this issue. Let me know if you want the link, I’ll get it for you.
I’ve just tracked it down and read it, it was an interesting read.
i am so sorry you feel this way.
i started to use a stick my mum gave me last year when my fibro really started to bite in but when i saw a different doctor~who decided to question the diagnosis of my usual doctor *sigh*~i stopped because he told me using a stick would be a ‘retrograde’ action for me *another sigh*!
well i recently started to use my stick again because of lots of reasons-weakness, exhaustion,dizzy spells,it feels like the joints/bones in my ankles, knees and hips will shatter with weight. the trouble is the pain i get in my hands, wrists, elbows and shoulders mean leaning on the stick gives me even more pain…you know!
i have my first appointment with the pain management clinic next month so i am hoping they can help, i dont know if crutches will help at all.
i am drifting…when i have used my stick i have felt bad for the reasons you list here, that old ‘but you dont look sick’ chestnut!