I am known for my incredibly open and honest sharing, on all sorts of stigma-related topics. I have many identities, which messages from society tell me I should be ashamed about. I’m transgender, I’m gay, I have mental health challenges, and I am an alcoholic and addict in recovery. My way of overcoming shame has been to share my story proudly. Why then, have I been struggling with shame and embarrassment about using a mobility scooter, and not talking about it?
Worsening Chronic Illness – A Diagnosis of ME/CFS
In June last year, my 4-year struggle with fatigue and ill-health turned from recurrent bouts to a permanent fixture. Since then, I have become increasingly worse, reduced to spending most of my day lying on my bed and unable to do much of anything. Most recently, I have received a diagnosis of ME/CFS. As someone who is very busy and active, my new limitations have, and continue to be, a work in progress to accept.
Losing My Mobility
Being stuck indoors and isolated is not good for anyone’s mental health. I love the outdoors and it’s one of my top wellness tools. Walks along the coast, across the hills and moors, has always been a love of mine. My fiance Chris and I love to spend our days off together discovering new places to walk through and explore.
We even began camping together when we first moved to Devon. Chris much prefers a holiday abroad than under canvas, but the pandemic prevented that. Camping together was so much fun! It’s been a positive thing to discover a new hobby for us to share.
However, with the worsening fatigue, camping and walking became increasingly more difficult. Every time I returned home from a camping weekend I would crash for a week. I didn’t understand this at the time. How could a gentle weekend away, with just little strolls and lots of lying in the sun, cause so much exhaustion and pain? Of course, I now know that this is Post Exertional Malaise (PEM) a hallmark symptom of ME/CFS.
Missing Out and Feeling Limited By ME/CFS
Since October, when my GP first told me he suspected ME/CFS, I’ve been learning to pace. Pacing has helped me to crash far less often and less severely.
However, to make that possible, I have had to drastically reduce my physical and mental energy use. This has meant mostly short, incredibly slow, 10-minute walks. Or more commonly, Chris driving the car and me watching the scenery through my window. This has brought me more sadness than there are adequate words to express.
Now, with spring blossoming and summer approaching, I should feel excited. I usually have festivals, days outdoors, and camping trips to book and look forward to. But, with the severity of my ME/CFS, none of those things were looking possible.
The idea of a mobility scooter had popped into my mind a couple of times, but I’d pushed it aside. One day, after a painful supermarket trip walking at a tortoise pace next to my patient fiancé, I did manage to ask about mobility scooter hire. That’s as far as I got. I could feel this knot of resistance and burn of shame at the thought of it. I was ashamed at being ashamed. Logically I knew I shouldn’t be.
Admitting my Limitations
It was Glastonbury festival that changed my mind. I’ve had a ticket since it was canceled in 2020, and had been so excited to see it finally rescheduled. It’s my yearly retreat as a long-time Glastonbury attendee. With the date for returning tickets approaching, I had a decision to make. With the state of my health, there was no way I could attend. I wouldn’t be able to carry a rucksack, let alone put up a tent. Should I return my ticket or keep it in the hope I got miraculously better by June?
Chris and I also had a caravan holiday approaching. I’d been away for 2 days for my Birthday and was worn out. Goodness knows what a week would do. I was also feeling guilty, as I expected we’d be spending much of the holiday sightseeing from the car. I know Chris understands, but still, I hate to be limiting his life too. The idea of holidays and festivals was becoming a source of stress and guilt, not what they should be at all!
Admitting my Need for Assistance
In terms of Glastonbury, there was one other choice, to apply for a personal assistant ticket and the use of the disabled facilities. Chris, hating the idea of camping in the mud with 200,000 people for 5 days but loving me, offered to be my PA. I applied and my application was successful. This means I have Chris on hand to help and a shuttle bus from the car park to a dedicated disability camping area with our stuff. I also have disability access shortcuts around the site and I can also hire a mobility scooter to help me get around. Thank goodness for Chris, my knight in rainbow glitter, and for Glastonbury’s incredible disability access team.
Considering a Mobility Scooter To Help Manage my Energy
Applying for Glastonbury accessibility, was the first step in acknowledging my need for assistance, in acknowledging my increasing disability, and in my needing a mobility aid. I began to then consider the use of a mobility scooter for the caravan holiday and started to look at hiring them. Stumbling on a second-hand site, I saw that for the price of a week’s hire, I could almost buy a second-hand scooter!
I found many for less than £300 second-hand. But I was still feeling so embarrassed by the idea of it. So much so that I didn’t even share the amazing Glastonbury news with people. I didn’t want to have to explain that I was using disabled camping and hiring a mobility scooter. I was angry with myself for feeling this way. Why was I so embarrassed? Why was using a mobility scooter something that made me burn with shame?
Acknowledging my Internalised Ableism
After a lot of painful reflection, I began to see that these feelings were likely due to some complicated emotional triggers, connected to growing up with an ill and disabled mum. And I had to also admit that a large chunk of it was down to internalized ableism. I saw the need for a mobility scooter as admitting defeat, as a last and worst-case scenario. I wasn’t ‘really’ disabled or ‘disabled enough’. Surely, I should wait until things got worse and there was no choice?
After talking with some incredible understanding friends, who didn’t judge me for these feelings, I began to see things differently. Finally, I took a deep breath, contacted a seller, and bought a second-hand Pride GoGo traveler boot scooter. When the seller delivered it, I sat on it, cried, and Chris put it in the boot of the car. I just couldn’t yet face using it.
Challenging my Thinking
Chris suggested I name it, to help make it feel easier, in the same way as I had with Fred the Fatigue. He suggested Molly the Mobility scooter. I have a wise as well as a handsome fiance.
Finally, one evening, we took Molly for a short spin around an indoor garden center. I will be honest and tell you that I did that because I didn’t want anyone to see me. At the time, I was planning to leave it for a few weeks, not tell anyone I was using it on holiday, and generally keep it a secret. Honestly, I am so ashamed for feeling this way.
A Change in Perspective
That weekend, we looked up an accessible section of the South West Coast Path. Finding a tarmacked route in Noss Mayo, we headed over. This is when my view of Molly the mobility scooter, took a huge paradigm shift.
For the first time in months, I could relax and enjoy nature. Usually, I’m having to focus on my tiny slow steps, or on watching my heart rate, whilst scanning my body for warning signs. When we walk, Chris is focusing on me, reminding me to slow down, making sure we don’t do too much, so that he doesn’t have to watch me go through an epic painful PEM crash.
Without all that going on, I was able to focus on the sights and sounds and smells around me and really be there in the moment. Even more importantly, Chris and I were walking much like our old selves side by side, together just simply enjoying a walk.
A New Freedom and a New Happiness
I’d been seeing this scooter as a symbol of being imprisoned by ME/CFS, and of a loss of independence, and yet here I was feeling freer and more independent than I had in months! In place of the shame I’d been feeling, was an incredible joy. I came out about Molly and of course, everyone has been supportive and understanding.
Our week away at the caravan park was absolute heaven on four wheels! We did a ton of sightseeing, Molly managed cobbled Cornwall streets and rocky coastal paths. I grinned from ear to ear the entire week. Chris commented that he hadn’t seen me light up like that for a long time. I was tired when we got home, but it was manageable fatigue and not a devastating crash. Without Molly, that would have been an entirely different week away.
Mobility Aids Are Pacing Tools for ME/CFS
The most important part of managing ME/CFS is using pacing techniques to help conserve limited energy and avoid going into an energy deficit and causing a crash. I’m realizing now, that pacing takes many forms. This scooter is simply one pacing tool. Using Molly will help me in my energy management and allow me to live my life.
Plus this scooter will help me in my recovery. The less I’m having fatigue crashes and symptom flares, the less stressed my body systems will be. This ultimately may allow for a remission of ME symptoms. Additionally, the positive effect on my mental health from this is amazing, and with mental and physical health so intimately connected, this is a very positive thing all around.
With all I’ve been through and all I share about, it’s daft that I allowed myself to feel ashamed about using a mobility scooter., I’m proud of who I am, including being someone who uses a mobility scooter.
You can follow my adventures on Molly in my South West Coast Path Virtual Walking challenge. You can also watch behind-the-scenes videos by joining Friends of Finn!
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This was really good to read, on multiple levels. Thank you for opening up and sharing it. ❤️
Thank you so much for this blog post. Today I have hired a mobility scooter for the first time, in my 30s with ME/CFS it was a big challenge for me to take this step too, but I’m glad I did. It was crazy to come inside after being out and about for an hour and not feel completely wiped out for a change. Hope you’re now feeling more comfortable with Molly and have had lots of happy outings.