{"id":16209,"date":"2022-11-16T10:07:58","date_gmt":"2022-11-16T10:07:58","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=16209"},"modified":"2023-04-20T09:50:19","modified_gmt":"2023-04-20T08:50:19","slug":"alice-ella-influencer-sense-awards-nominee-social-media","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/alice-ella-influencer-sense-awards-nominee-social-media\/","title":{"rendered":"Social media helped me find pride in my invisible disability"},"content":{"rendered":"\n<p class=\"is-style-intro\">I\u2019ve lived with ME (myalgic encephalomyelitis, or chronic fatigue syndrome) for eighteen years. During periods of severe ME, I\u2019ve been bed bound, and couldn\u2019t even tolerate any light or sound, or walk at all. I now still suffer debilitating fatigue daily.\u00a0<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"1024\" src=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-1024x1024.jpg\" alt=\"Alice Ella, a smiling white woman with brown hair in a ponytail, holds her mobility aid in front of a backdrop of disco balls.\" class=\"wp-image-16237\"\/ style=\"object-position: 50.42% 37.81%;\" srcset=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-1024x1024.jpg 1024w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-600x600.jpg 600w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-150x150.jpg 150w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-768x768.jpg 768w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-1536x1536.jpg 1536w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2.jpg 1800w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-500x500.jpg 500w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-450x450.jpg 450w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-1600x1600.jpg 1600w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-300x300.jpg 300w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-2-100x100.jpg 100w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>As my disability is invisible, I regularly come across a lot of <a href=\"https:\/\/www.sense.org.uk\/information-and-advice\/ableism-and-disablism\/\">ableism<\/a> (discrimination or prejudice related to being disabled). I often find that people just don\u2019t understand.&nbsp;<\/p>\n\n\n\n<p>Building a following on social media has allowed me to challenge that, by educating people on what it means to have an invisible disability.<\/p>\n\n\n\n<p>It\u2019s also helped me find a community I truly love.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Social media helped me feel so much less alone<\/strong><\/h2>\n\n\n\n<p>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.&nbsp;<\/p>\n\n\n\n<p>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.&nbsp;<\/p>\n\n\n\n<p>So, I started posting about invisible illnesses and disabilities. The response was overwhelming. So many people related and I felt so much less alone.&nbsp;<\/p>\n\n\n\n<p>When I had severe ME in my early teens I felt completely lost, and there weren\u2019t any online communities. When I had to leave school, I just had the occasional friend visit me, and I wasn\u2019t able to socialise.&nbsp;<\/p>\n\n\n\n<p>Now that we have such an incredible online community, I feel so much more connected and I know I\u2019m 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.&nbsp;<\/p>\n\n\n\n<p>I eventually made a separate Instagram page, as unfortunately I haven\u2019t 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.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"820\" height=\"1024\" src=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-1-820x1024.jpg\" alt=\"Alice Ella, a white woman wearing a red dress in a wheelchair.\" class=\"wp-image-16235\" srcset=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-1-820x1024.jpg 820w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-1-600x750.jpg 600w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-1-768x959.jpg 768w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-1-1229x1536.jpg 1229w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-1-500x625.jpg 500w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-1-1281x1600.jpg 1281w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/11\/Alice-Ella-1.jpg 1440w\" sizes=\"(max-width: 820px) 100vw, 820px\" \/><\/figure>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>How I use my platform to celebrate disability<\/strong><\/h2>\n\n\n\n<p>I really want to show that it\u2019s okay to be disabled and proud, and damn cute too!<\/p>\n\n\n\n<p>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 \u2018taboo\u2019 health subjects.<\/p>\n\n\n\n<p>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.<\/p>\n\n\n\n<figure class=\"wp-block-pullquote alignright is-style-primary-tint-10\"><blockquote><p>&#8220;I really want to show that it\u2019s okay to be disabled and proud, and damn cute too!&#8221;<\/p><cite>Alice Ella, Influencer of the Year nominee at the Sense Awards 2022<\/cite><\/blockquote><\/figure>\n\n\n\n<p>I also try to make videos that poke fun at chronic life, with sarcasm and dry humour\u2026 as that\u2019s definitely my coping mechanism.&nbsp;<\/p>\n\n\n\n<p>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\u2019m super excited about.&nbsp;<\/p>\n\n\n\n<p>We can face such judgement and negativity when it comes to disability aids, so I\u2019ve 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!&nbsp;<\/p>\n\n\n\n<p>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.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>I\u2019m thrilled to be nominated for a Sense Award<\/strong><\/h2>\n\n\n\n<p>Being shortlisted for the Sense Influencer of the Year award is incredible. I couldn\u2019t believe what I was reading when I saw the email telling me the news!&nbsp;<\/p>\n\n\n\n<p>It\u2019s so heartwarming to feel seen, and I\u2019m hoping that this may help raise more awareness and understanding of invisible illnesses and disabilities.&nbsp;<\/p>\n\n\n\n<p>It\u2019s so important for us to be represented and shown on big platforms, and to have our voices heard.&nbsp;&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box  ctaBox    is-style-textured-secondary-tint-10\">\n    <div class=\"ctaBox__row\">\n      <div class=\"ctaBox__content\">\n        <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Tune into the Sense Awards<\/h2>\n\n\n\n<p>Alice Ella is just one of our brilliant nominees for the Sense Awards 2022. Join us to celebrate all the nominees and find out who wins on 24 November.<\/p>\n\n<\/div>\n      <\/div>\n\n      <div class=\"ctaBox__cta\">\n        <a href=\"https:\/\/www.sense.org.uk\/sense-awards\/\" class=\"button  button--primary\">Find out more<\/a>\n      <\/div>\n    <\/div>\n\n  <\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Alice Ella, a nominee for Influencer of the Year at the Sense Awards 2022, explains how social media helped her feel less alone.<\/p>\n","protected":false},"author":14,"featured_media":16235,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[363],"class_list":["post-16209","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-alice-ella"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/16209","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=16209"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/16209\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/16235"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=16209"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=16209"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=16209"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=16209"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}