Once I Was a Young Woman With a Walking Stick (by sarah)

This is a long piece I (Sarah) have written in response to Kathleen Stock's article Why Are Young Women Using Walking Sticks? in The Times newspaper. The article is behind a paywall. The gist of it is the concept that young women ("gen Z") are appearing using walking sticks and mobility aids because of social contagion from seeing them on social media and that they don't really need them...

This attitude is not new and it is something that causes harm - disability and dependence are seen as weakness and scrounging, especially if you are from a working class background. This social concept gets to individuals especially girls and young women and causes them to turn on themselves, "pushing through" situations that should not be pushed through, leading to more medical problems down the line and self loathing. Chronic pain patients are already at high risk of suicide before this is added in because it's not fun being in pain all the time and watching your life go down the drain is soul destroying.

The idea that walking aids cause disability and reliance is just wrong - they are not the hindrance but the freedom. Using walking sticks or wheelchairs or glasses means you have a chance to live, work etc... independently. Not using them can quite literally cripple you for life in a horrible cycle of "pretend you are fine until you collapse dangerously ill" and then being more disabled than you were before.

I had horrendous internalised ablism, as this is called, and have even almost died. I always thought I was weak and just not trying hard enough - I was in despair. I am writing this piece because there are young women in the same position now as I was then and I do not want them to suffer the mistakes I made - mistakes that will seem right to them after reading the article by Kathleen - mistakes that will lead to more pain and struggle.

Also keep in mind these are the average lengths of time for diagnosis to take for some conditions that can lead young women to needing to use walking aids:

Endometriosis = 9 years and 4 months. You will be told to keep bleeding and pain diaries for months to years before anyone will even start looking into it.

MS (Multiple Scleroses) = on average 3 months to a couple of yrs from the point of being sent for specific diagnostic tests. Most people will have had symptoms for years before they reach this point (MS can present fast and quickly deteriorating, and that is diagnosed quickly from first symptoms, but a lot of the time it presents in a less acute form). With the less acute form you also need have multiple episodes of your nerve fibres being attacked before you are diagnosed. This condition also needs a neurologist for diagnosis and the UK has a shortage.

Hypermobility Syndrome = an average of 21 yrs, which takes decades to be diagnosed with a connective tissue disorder that causes mobility issues. Even if you are diagnosed there is often very little help to be had, even for children.

If you have one of these conditions you are at higher risk of having others.

And so with all that in mind - here is my piece:

I am now 45 years old and have had head injuries and falls and damaged joints from not using walking aids and wheelchairs when I should have - why did I not use the walking aids such as walking sticks?

A mix of embarrassment, feeling it would be giving up and also the attitude of people when I did use them made me feel like I was making the whole thing up especially before diagnosis - even though I actually had a diagnosis from childhood of hypermobility I was made to feel that was some how not enough.

With family and friends actively encouraging me to ignore the physio's advice and just get on with things - they said everyone aches on long walks and whilst standing for long periods. So I tried to ignore the dull burn that would get worse and the steps that made it feel like glass was shearing my pelvis in two. I worried about asking to rest, I would be trying not to cry when there were no seats for me at the gig or bus stop or on the train - the pain would become all consuming, I would be more likely to lose my temper towards the end of a shift because pain killers were not touching the pain and in one of my jobs I wasn't allowed to take my opiate based pain killers. I was walking around on a broken pelvis with a wonky neck vertebra. My knees were actually dislocating in different ways and after one stint of pretending I didn't need a walking stick a physio was needed to teach me how to walk with a permanently mangled ankle.

My pelvis was diagnosed during Jean's pregnancy with the severity becoming life threatening during labour as my coccyx was fused on one side where my body had tried to repair the damage itself.

In the wheelchair times when I was 24-25 years old my parents took me to Hobbycraft and the little independent Sewing shop in Brentwood so I had stuff to do because I was an outside person - I had just graduated as a geologist - but I was stuck and entering motherhood where I was going to be trying to breast feed and therefore not taking the painkillers that could actually help me. I needed distraction and to feel like I was still doing something... anything so as not to feel useless.

Even the land lady was refusing to allow social services to put the bars and ramp in I needed because I was young and I surely wouldn't need them long term. I did not know this was an illegal move on her part at the time.

In Hobbycraft there were wonders - expensive wonders... and I got some card making stuff there and a whale embroidery kit from the sewing shop from 2 years previously when I had destroyed my ankle for the third time - trying to keep up with everyone and pretend I wasn't disabled. And the fluffy yarn/eyelash wool from a little while before that when I was recovering from chronic vertigo/labyrinthitis and chronic fatigue.... from glandular fever now called EBV.

I had begun to notice a pattern... there was always someone else in there like me in a wheel chair or on crutches or using a walking stick... lots of young women. But I didn't see them in other places - at the charity disco - just me, buying fun wedding clothes - just me, even in the park - just me.

Intrigued I actually asked my mum about it as at the time she worked in what is now called SEN (Special Educational Needs). She said that the women were about the right age for things like muscle wasting diseases to hit or for there to have been some complication with wombs which can cripple you in many ways and even sadly to have been attacked and left injured mainly by hopefully now exes. Mum said and that craft is often suggested as occupational therapy both to get the use of hands back or slow the degeneration and to keep people from going stir crazy being stuck in bed all the time. She ran a group at one of the local libraries teaching crafts to exactly this demographic - young women with walking sticks and in wheel chairs.

We had recently had the incident where one of my mum's colleagues had commented on how they didn't know how I could possibly go out and about in this sort of state (the wheelchair) and how they wouldn't have been able to face it.

Then there was the issue of the fact I could get myself in and out of the wheelchair and I could walk with my crutches - being made to feel that I was making up needing the wheel chair at all - so much so that I did myself active harm trying to walk without it - and doing completely daft things like getting out and folding it up so I could get on the bus - after the third time the bus driver told me not to - he liked using the ramp lowering thing which was relatively new. But I had been told off by other commuters for taking up the wheel chair space for actual wheel chair users.

Just on crutches with no obvious cast or bandages got me shouted at for using the accessible seating and that escalated even more when it was just the walking stick.

And I wasn't the only one experiencing this - being made to feel shame at the disability and also like we were somehow expecting too much or taking resources from others. It was so bad that at the group for chronic pain at Chelsea and Westminster hospital the younger attendees which was anyone under about 60 had a session on it - being told it was ok to ask for a seat and then all of us explaining how it was us that tended to give up our seats for the frail old people mainly because we knew what it was like to need that seat but we would then end up in weeks of flare up and pain or even passing out.

This was more a thing predominantly for the young women on the course who definitely still felt they had to pretend everything was fine and end up in pain so children and partners etc.. could have the best of it - not just an ok time but the best of it whilst some of us were literally dying.

The routes to diagnosis for many conditions also take like a decade - endometriosis can cause massive issues with walking and passing out and might need operations and even without ops the patient might need a walking stick, autoimmune diseases that attack after illness like flu and COVID can take years to be diagnosed and generally have to get life threatening - and we all hope it is just a post viral malaise. Hypermobility and connective tissue disorders and syndrome even when picked up in childhood can be ignored until a server injury occurs. And this is before those muscle wasting diseases are taken into account or strokes caused by birth control (yes really it is a side effect - one of my friends had a stroke before she was 20 because of this and I myself can not take "the pill" due to the blood clot risk).

Due to the biology that allows pregnancy to actually be able to happen those of us with wombs are more likely to get autoimmune diseases than those who have never had a womb.

As I mentioned at the beginning of this piece having one of the medical issues means you are more likely to have others like seizures and low oxygen levels, heart problems... and a lot of it will become an issue or be triggered in young women. Hormone shifts alone can cause these illnesses to switch on and pregnancy and birth by their very natures are traumatic.

They will often have to use a walking stick and pre diagnosis have a list of vague symptoms like palpitations and fatigue. They are on a long road with conditions that cause and are often misdiagnosed as "just" anxiety. Some of them die or end up in wheelchairs for life because no one listened and it was only when it got life threatening were they taken seriously.

Even coils (IUD) another form of contraceptive in the form of a device inserted into the womb often without adequate pain relief and various other medical gauzes and sheaths used on women can migrate into the body and causing pain and mobility issues and in rare instances wheelchairs for life. A lot of women with this issue have to argue and beg for the device to be removed and the issue is only discovered when the attempt at removal is made. These devices are often put in to help with other conditions like endometriosis.

Many of these medical conditions are variable meaning you don't know how you will be each day - some days you can climb a mountain and others you need an adapted bed just to sit up from laying. Sometimes that can be the same day.

Sometimes people see you doing exercise and report you (or try at least) because they believe you are fraudulently collecting benefits because you are following the hospital and physios advice :/ (yes this happens - yes this happens to me and yes it happens to others).

For me the advent of collapsible walking sticks was a boon because it didn't look so medical and came in pretty colours then there were crutches too! And I kept saying if I would get some nice crutches I could theme sticks and crutches to my costumes and outfits - I spray painted my chipped walking stick to make a candy cane one for when I was working in a Christmas Grotto... the crutches were prohibitively expensive but I was saving for them when post COVID I noticed some rather nasty things being said both by the general public and sometimes even medical professionals - the pretty crutches are seen as what the not really ill have... because they are a fashion accessory.

Grave's disease nearly killed me because it was dismissed as early menopause and just anxiety... even I ignored it for those reasons. Endometriosis took until I had Mary to be diagnosed as bad - I was 30 years old and had had an ectopic pregnancy due to it and had been going to the doctors' since I was 13 with periods that were more of the month than not, made me pass out and throw up. It had been diagnosed from my corresponding nose bleeds but seen as mild. I bled for 2 years after having Mary and had a wandering coil that had to be cut out... and these are just some of the things that I have as an individual have that can cause a young woman to need a walking stick with no diagnosis because they are pre diagnosis. And if you need a piece of equipment on such a regular basis and can afford a pretty version... then why is that a problem?

I was pleased that there were more options for young women going to end of school parties and graduations - they should have the option of themed walking aids that match their outfits.

With studies and investigations highlighting just how much medical gas lighting happens to women and actual investment into the chronic conditions and into things like how medicines actual work on bodies with wombs and how they work - I was starting to feel the world was turning for the good on this subject but then this article started doing the rounds at the same time that people especially young people on benefits are being scapegoated and villianised - and I felt I have to say something because I was one of those girls being dismissed as making it all up for attention and accessories.

Young women needing walking sticks isn't new just in the past young women just felt they had to hide when they were like this including never socialising and being stuck at home and now they are out there doing things - visible and living life - including working and paying their way.

I was a sick child with complex medical stuff but it still basically took me until my 40s to get some of my diagnoses including a rare genetic disorder and over 10 autoimmune diseases not to mention physical injuries - some of which could have been avoided if I had been using a walking aid like I was supposed to. That is over 2 decades of diagnostic vagueness that had me doubting myself so articles like this are so so dangerous and I just hope that any young woman who sees that article or has to deal with well meaning family or friends ramming it down their throats - gets to see a post like this one and knows that they should keep on being themselves and getting out there and supporting themselves in what ever way makes life work able for them.

In fact that is the reason social media is so full of walking sticks and crutches in the first place - not a social contagion as Kathleen would have it but rather a sharing of stories - an active statement that we exist and can still live our lives. We are no longer hiding and we are sharing so the younger generation can see and know that it is ok to go out and about and use the walking stick.

And you know there will be people who don't need them they will be rare but exist but walking home on your own as a young woman... speaking softly and carrying a big stick is also going to be appealing and still not some underhanded fraud on the part of the young woman.

Why are so many young women using walking sticks?

Because they are disabled and this article seems to want to stir up bad feeling towards an already marginalised group.

And I haven't even covered the author's dismissive comments on medical conditions that she sees as made up but have firm diagnostic criteria such as PoTS - there are many other write up from the official support groups for these conditions - here is PoTS UK's.