Raising Voices - Emma's Story with Psoriatic Arthritis
Meet Emma, Social Media Officer for a charity and a passionate advocate for raising the voice of disabled people everywhere. Emma’s is one of those valuable voices that makes us feel less alone. Openly sharing her story and what it’s like to live with disabilities and health difficulties all whilst managing multiple health conditions of her own, including psoriatic arthritis.
We loved hearing about some of Emma’s ups and downs, likes and dislikes, and the pearls of wisdom she’s gathered along the way…
Can you tell us a little bit about yourself?
Hi, my name is Emma. I'm a 30-something living in Southampton, and I hybrid work as a Social Media Officer for a charity. I’m diagnosed with a few conditions including psoriatic arthritis, psoriasis, PCOS, degenerate disc disease and hiatus hernia. I also struggle with ongoing symptoms of PTSD, as well as anxiety.
How long have you been living with arthritis and how has it affected your daily life?
I was officially diagnosed with psoriatic arthritis (PsA) in 2018, 10 years after my psoriasis diagnosis, but in hindsight, I’ve lived and struggled with many of the symptoms for a lot longer.
Getting a diagnosis for inflammatory arthritis took a while as it doesn’t always show up on blood tests, but the medication I’m now prescribed has been life changing and has helped me in numerous ways. That's not to say that things are easy, though. There are side effects to the medication, and I struggle with fatigue as well as the mental and emotional toll it can take. I use mobility aids sometimes, not just when my pain is heightened, but also for the fatigue and dizzy spells.
I've found navigating the world with chronic conditions and a disability has been incredibly difficult, especially when my disability is "invisible". So I'm grateful for schemes that help, such as my Sunflower Lanyard and Blue Badge, as well as places that offer different access needs, but they’re not easy to come by which is why myself and so many others continue to raise awareness, using our voices as platforms to make positive change (something I feel very privileged to be able to do).
Do you feel adjusting to a disability is supported by society? How could this be better?
I feel there's still a long way to go. There are a lot of establishments and companies who preach being accessible without truly understanding what that means, and I think many people still don't understand how complex and wide-ranging disabilities and accessibility needs are. It's something I'm personally still learning too - especially through my social media work.
Are there any things you've found have helped support you or impacted your mental health in a positive way when it comes to living with a disability?
I'm fortunate that I've been to therapy in the past, as well as working in and studying mental health myself. It’s something I've always been very passionate about, and I think this really helped.
Don't get me wrong, there's still some very hard and lonely times, but one thing I'm incredibly grateful for is the amazing online community I've found – especially my Instagram - which serves as a reminder of how much support really is out there.
When it comes to using mobility aids can you tell us a bit about when you started using them and how you found the adjustment to them?
From what I can remember, I started using a stick back in 2016 after a severe flare up in my back and I was struggling to get around. I felt incredibly self-conscious and hated how the stick looked. Eventually my symptoms meant I had to get some basic crutches – again, they were very uncomfortable and looked horrible.
What I did find amazing though was the difference in reactions to the stick vs the crutches. When using crutches, it seemed to be "accepted" in a sympathetic kind of way, a bit like "oh, she must have sprained something", or like I was recovering from a broken leg.
But when using a walking stick, I was met with, "is that part of a costume", "why are you using a stick, you're not old". Again, this put me off, until I found companies who made beautiful sticks and crutches along with a community of young people making amazing content around how this isn’t an age thing – helping me feel seen and validated. And now I make my own content around why and how mobility aids are important.
What is your biggest struggle living with your disability?
I've learnt to embrace my disability and remind myself it's a part of who I am, and there's nothing wrong with that. If anything, I kind of like it now.
Of course, it's not easy and I wouldn't wish the endless pain, fatigue, medical procedures, uncertainty and worries on anyone, but it's really helped me to grow and see the world and my life in a new light - a much more positive one.
For me, the biggest struggle is the uncertainty and worry of the future - how my disability is likely to become worse and that I will be medicated for the rest of my life. There have been times where I've been literally stuck in bed and absolutely panicked about not being able to move again.
I also struggle with the uncertainty of flare ups, and hate feeling like I'm letting people down; that’s when my mental health really takes a hit. I'm so grateful and fortunate to have wonderfully supportive friends, family and employers who have been there for me through so much and are endlessly reassuring.
What advice would you give to someone facing a life changing diagnosis or injury?
Firstly, let yourself feel - feel it all. There's no right or wrong emotions and feelings that are brought up when you're told that your life has changed. You may find that things change day-to-day, and some days are a lot harder than others. But it's how you work through it that's important.
Find your support network, whether that's at home, with friends, or even online - it can feel lonely and daunting, but I guarantee you there are people ready to help you through your journey. On that note, remember it’s okay to ask for help - you're not a burden. Every single person, no matter how together and confident they might seem, needs help now and then...it's human nature.
Get to know your condition/disability and find reliable and trusted sources. Whilst social media can have some great info out there, there's also a lot of false information. Speak to your healthcare team about the best organisations to go to for support. For me personally, organisations such as Versus Arthritis and The Psoriasis Association have been phenomenal.
Most of all, go easy on yourself. You are your top priority, and your health should always come first, so never feel it’s wrong to cancel plans, say no, or shut off for a while to take care of yourself.
Have you found there to be any stigmas around arthritis? What are they and how do you tackle them day to day?
The biggest stigma is around age – as arthritis is very much seen as an "old person's disease". This couldn't be further from the truth as even babies can have arthritis.
Another one that gets to me is osteoarthritis being labelled as "wear and tear" – something I’ve heard healthcare professionals say. Again, this isn’t the case and really dismisses the agony many people who are living with it are in.
Through my job and advocacy work online, I try my hardest to dispel as many myths as possible, but there is still so much educational work to be done. There are some great organisations out there such as Versus Arthritis, who work hard to share reliable, fact-based information – and are the places healthcare professionals and advocates should be signposting people to. Whilst it's important for people to share their own experiences, they're just that, personal experiences.
If you could change one thing to improve the lives of disabled people, what would it be?
Stamping out ableism and passing the mic to ensure disabled people's voices are heard. It feels like many people see it as "effort" to accommodate for disabled people and provide accessibility when, really, it's not that difficult.
Listen to disabled voices, understand the importance of why accessibility and inclusivity actually benefits everyone! I also think people need to remember that disability is vast and anyone can become disabled at any point in their life.
I want to see more education and more platforms for disabled people to share their experiences, raise their voices and be the leaders in creating real change.
When did you start using Cool Crutches or Sticks or both, and why?
I got my first Cool Crutches stick in 2023 - Midnight Sky, which also had proceeds going to charity. I'd already started to grow a collection of sticks, but I saw this one and fell in love.
It's also a great stick to travel and commute with as it’s so lightweight. I can shrink it down, and it has an ergonomic handle, which for me is very helpful. I I also have the Black Glitter Crutches which finally replaced the ugly, painful ones I've been using - they are so comfortable!
I’ve wanted to buy from Cool Crutches as I love the ethos and values of the company and have seen how amazing they are within the community and in raising voices of disabled people. It's great to see the company thrive and see so many more people using Cool Crutches products.
Do you think Cool Crutches have helped you?
The Cool Crutches stick I have is definitely the most comfortable one I own, and despite being patterned, it still feels discreet. I used it when I worked the London Marathon in 2023 – and it was a game changer as I was on my feet all day.
I remember how it felt using unstable sticks with painful handles, and my Cool Crutches stick provides so much more comfort, especially on my hands and wrists which can get incredibly painful.
Have Cool Crutches changed your view of mobility aids at all?
Yes, definitely. I never knew you could have so many different types of crutches, haha, and be able to stylise mobility aids so much.
I also love how much Cool Crutches give back to the community and the work that's done to recycle old/unwanted sticks and crutches. It really makes you feel part of something empowering and bigger...as well as super stylish. For younger people, especially, I think it's a real safe space and a way to help people feel more confident and happier using mobility aids.
How do businesses like Cool Crutches help the disabled community?
Mostly through empowerment as well as raising so much more awareness. I've seen how inclusive Cool Crutches are for all types of disabilities, something not every company does – it helps reduce so much stigma and enables people to feel seen and more supported.
The additional work behind the scenes is also incredible, and I'm truly grateful to the team for being such an uplifting space and the passion and love that goes into everything. I've personally felt so supported by them, through encouraging and supportive messages.
What's the best advice you've been given?
Actions over words. It took me an incredibly long time to act on this and see others do the same.
Anyone can say sorry, or that they won't do it again, but if they keep repeating those words then it doesn’t mean anything. Once those words are turned into actions and the destructive patterns are stopped, then communication becomes better, and relationships thrive. There's no point wasting time on endless negativity and fighting battles that will never be won.
What are your top 3 products for helping daily life with arthritis?
My sticks and crutches, compression gloves, and I’d have to say my medication.
What's your favourite Cool Crutches design and why?
There's quite a few – they are truly beautiful – but I adore the glitter range, especially black glitter. Those who know me know I never really left my goth and emo phase and still very much wear mostly black clothing. I'm also such an autumn, Halloween person, so the black glitter gives me the spooky vibes I need whilst also having some glam. I can use them for general use or take them to a fancy event.
If you had to describe Cool Crutches in 3 words what would they be?
Inclusive, supportive, empowering
If you had to describe the disabled community in 3 words what would they be?
Loving, beautiful, proud
Many thanks Emma, for sharing your insights and wisdom with us. It’s vital for our community to have strong voices like yours. Thanks so much for all you do in leading us towards real, positive change!
If you've enjoyed reading this interview, why not check out some more from our community:
Navigating Motherhood with a Disability - Megan's Story
Cauda Equina Awareness - One Woman's Mission to Support, Comfort & Empower
Embracing Change: Rosanna's Colourful Journey with Cool Crutches
