Living with a rare and life-long illness is tough, and it’s the reason why you may see me using a walking stick now and again.
If you have vasculitis, you know as well as I do that you can wake up one day and have 14 different issues popping off around your body. Luckily, there are aids available if they’re needed, such as medication, counselling, and physical aids such as walking sticks and mobility scooters.
Of course, this statement comes from a place of privilege – I have money, access to free healthcare and have a great support system, so when I say ‘there are things available’, I really wish I meant for everyone.
About two months ago, I decided to start using a walking stick. Winter is really tough for me and I got to the point where I couldn’t deal with how challenging it felt to walk short distances without support.
I get tired and achy quickly, so my stick (named Gertrude) entered my life one rainy Saturday afternoon.
Now, I’m incredibly lucky to have access to Gertrude. She is really useful to me when I’m fatigued and hurting, and I’m really grateful for the accessibility I have with her. However, disabilities and aids are always complicated, so I thought I’d sum up all of the various conflicting feelings I’ve had about her presence in my life, and share some experiences, too!
I can’t speak for everyone, but a large reason why I didn’t get a walking stick at first is that I was embarrassed to make my invisible illness visible. I don’t know why. I’ve never judged any walking stick user for needing help, so why did I judge myself?
In all honesty, because a lot of people don’t understand invisible illness, I thought that people would think I’m making a huge deal out of nothing. I feared being judged, and having what I deemed to be a vulnerability on display.
It was just the other day that I had a taxi driver make some insulting comments about my disability.
I was walking to the car with a rucksack, a laptop bag, a travel mug, and Gertrude. He told me, from the inside of his car, to “be quicker, because it’s cold.” I explained that I couldn’t physically be quicker when negotiating everything with a stick. He said, “well, you’ll have to be quicker when you get out, it’s far too cold.”
When I didn’t respond, he asked “did you hurt your ankle or something?” I responded, “I have a disability.” Really, I didn’t need to get into it. To top it all off, he said “oh, I hoped it would be something cool, like base jumping off a skyscraper or falling over when drunk.”
Like, wow, I’m sorry that my disability isn’t cool enough for you. Clearly you’re confused at how a 21-year-old can have a disability, but we’re in the same boat for thinking what I have isn’t cool. It actually SUCKS. (Everyone I told about this was INFURIATED. Which was reassuring!)
On the whole, getting a stick was a big obstacle I had to overcome, but it felt empowering when I did. I do get stupid comments like the above, but I know to rise above them. Learning to ask for help is something to be really proud of, and having my stick has really helped me this wintertime.
The first few days of using my stick, I could feel everyone looking at me. It was humiliating. ‘Why is she using that?’ I could feel them wonder.
In actual fact, I couldn’t accurately tell you how much of that was harmless curiosity, my own insecurities projected onto others, or actual judgement. Realistically, I really think it was a split between the first two. Because my stick felt like such a permanent thing (in comparison to the temporary excitement of a crutch or a plaster cast) it felt like I was making a dramatic statement. I wasn’t, but I felt paranoid in those instances.
The loveliest thing about it was that those who I interact with on a daily basis were lovely to me. They complimented Gertrude and wanted to learn more about her. ‘Where did you get it?’ ‘I love the pattern, it’s so pretty’ ‘it’s so cool!’
As much as I am lucky to be around such wonderful and supportive people, strangers can be less understanding.
In busy crowds or supermarkets, I’ve had people push and shove and nearly bulldoze me over. It’s rude, thoughtless, and genuinely a bit humiliating. Please give people like me space if you’re guilty of this!
Need to tie your laces up while using a stick? Forget about it. Sticks, for the majority of the time, do not like leaning against things like walls. I wish Gertrude would cooperate, but she really doesn’t like the attention being away from her.
She will fall and clatter and smack against the floor, basically throw a tantrum, and everyone will look. It’s not like I can use her as a crutch when tying my laces, so it’s all a bit awkward and annoying at times. Top tip: make sure you’re sitting down!
I really need to practice the art of this.
Getting out of a car is so awkward. You need to get the stick ready, your body in a position to get out of the car, and often with limited space. The amount of times my stick has fallen straight out of the car and onto the floor is mind-bendingly frustrating.
Practice does make perfect, though!
Opening a door and walking through it with a stick is more difficult than you’d anticipate.
One hand is relying on a stick for stability, whilst the other is exerting pressure and trying to handle getting through the door logistically. It’s hard to explain, but you can trust me when I say it’s awkward.
Now, staircases are REALLY hard when you have mobility issues.
If I was in a position where I needed my stick constantly, all-year round, I don’t think I’d be able to use them. However, I’m in a lucky situation that I can face them if I pace myself, take it very slowly, and breathe deeply.
With a stick, it’s a lot easier. I’m able to distribute weight evenly between the bannister and Gertrude, so at least that’s a plus.
Back to my initial point – people really will try and understand. Obviously some people will be judgemental, but those closest to you are far more likely to open a dialogue with you and want to learn more.
It’s really nice when other people are politely inquisitive, as it shows they care and want to learn more about your disability. I genuinely don’t find it rude when people ask me about it – inquisitiveness is natural and I’m more than happy to speak about it. Of course, that doesn’t mean everyone is, though, so approach this at your discretion!
These days, you can get all sorts of designs and colours. Gertrude is black, collapsible and covered in flowers, with a really accessible ergonomic handle. It’s nice to have an aid which reflects a piece of you!
If you’re looking for one – how cool is this cat-covered walking stick!? (This isn’t sponsored, it’s just amazing.)
Now, I’m not faking at being disabled just because I don’t use Gertrude 24/7.
Sometimes I feel strong enough to navigate the world without her and will collapse her into my bag, or even on my braver days, leave her at home. It doesn’t make me fake, it just means that some days are better than others and I try to be as independently mobile as I can.
Disability affects everyone differently. I am not too young to be disabled and my disability is still valid despite it being ‘invisible’.
I’m actually a lot faster with my stick than without, and people tend to get confused at how I can be so fast when I’m using it. It’s a great pacemaker for me and allows me that extra support when cruising ahead of everyone else!
Before I end this, it’s important to note that different people have different levels of ability. Because I’ve used a stick this winter, it doesn’t mean I’ll be using it every day for the rest of my life. Sometimes I have good days, and sometimes I have bad days.
Seasons definitely affect me in different ways. You may see me use it less in summer, but that doesn’t mean I’m faking my mobility issues. I think that there’s a culture of calling out disabled people for being ‘fraudulent’, and so I hope my writing helps to try and dispel this.
Here’s a video I saw recently which conveyed this really well – Ellen is great for portraying this so succinctly!