Social media helped me find pride in my invisible disability

I’ve lived with ME (myalgic encephalomyelitis, or chronic fatigue syndrome) for eighteen years. During periods of severe ME, I’ve been bed bound, and couldn’t even tolerate any light or sound, or walk at all. I now still suffer debilitating fatigue daily. 

As my disability is invisible, I regularly come across a lot of ableism (discrimination or prejudice related to being disabled). I often find that people just don’t understand. 

Building a following on social media has allowed me to challenge that, by educating people on what it means to have an invisible disability.

It’s also helped me find a community I truly love.

Social media helped me feel so much less alone

I started posting on social media in around 2012. It was all mainly focused on my music career as a singer and songwriter, but unfortunately my health constantly got in the way of my music. 

I felt like my socials were showing me living a lie. Back then, I would manage to do studio sessions and gigs, but no one would see the days or weeks of constant resting, and the pain and fatigue afterwards, and how much of a struggle it all was. 

So, I started posting about invisible illnesses and disabilities. The response was overwhelming. So many people related and I felt so much less alone. 

When I had severe ME in my early teens I felt completely lost, and there weren’t any online communities. When I had to leave school, I just had the occasional friend visit me, and I wasn’t able to socialise. 

Now that we have such an incredible online community, I feel so much more connected and I know I’m not alone in my struggles too. So many of us have such empowering pages filled with disabled body positivity and humour. I absolutely love it. 

I eventually made a separate Instagram page, as unfortunately I haven’t been able to do any music for a long time now. My socials are now focused towards showing the real battles that we face living with chronic illness and/or disabilities. 

How I use my platform to celebrate disability

I really want to show that it’s okay to be disabled and proud, and damn cute too!

Fashion, fun and sex are all still important when living with a chronic illness and/or disability. I love collaborating with fashion brands, sex toy companies, and brands that promote talking openly about things like period health and other ‘taboo’ health subjects.

I love collaborating with pages that embrace all body types. One day, I hope to see a more diverse range of people in adverts and more disabled people on big feeds.

“I really want to show that it’s okay to be disabled and proud, and damn cute too!”

Alice Ella, Influencer of the Year nominee at the Sense Awards 2022

I also try to make videos that poke fun at chronic life, with sarcasm and dry humour… as that’s definitely my coping mechanism. 

I try to raise as much money for charities as possible when selling my merchandise on Etsy, and have recently started a new mobility aids business which I’m super excited about. 

We can face such judgement and negativity when it comes to disability aids, so I’ve been making disco walking sticks, crutches and blind canes, as well as bold print wheelchair cushion covers too. If people want to stare, give them even more to stare at! 

I try to reply to all of the comments and messages (when my energy levels allow) and I really try to support other people going through the grief of chronic illness.

I’m thrilled to be nominated for a Sense Award

Being shortlisted for the Sense Influencer of the Year award is incredible. I couldn’t believe what I was reading when I saw the email telling me the news! 

It’s so heartwarming to feel seen, and I’m hoping that this may help raise more awareness and understanding of invisible illnesses and disabilities. 

It’s so important for us to be represented and shown on big platforms, and to have our voices heard.