{"id":2621,"date":"2023-07-18T16:19:32","date_gmt":"2023-07-18T16:19:32","guid":{"rendered":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/?p=2621"},"modified":"2023-07-18T16:19:32","modified_gmt":"2023-07-18T16:19:32","slug":"living-unseen-navigating-work-with-a-hidden-disability","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/living-unseen-navigating-work-with-a-hidden-disability\/","title":{"rendered":"Living Unseen: Navigating Work with a Hidden Disability"},"content":{"rendered":"<h2 style=\"font-weight: 400\"><strong>Advocating for Inclusion in Research<\/strong><\/h2>\n<p style=\"font-weight: 400\">The Centre for Trials Research Equality, Diversity and Inclusion (EDI) Group is a small group of volunteers from across the Centre who are passionate about all things EDI for our staff. We look at processes, celebrate major diversity events, and ensure that EDI stays on the agenda of what we do as a Centre and for our staff. Every year, we focus in on one of the protected characteristics, as defined by the Equality Act 2010. In 2023, we are looking at disability as our focus for the year, and as part of this we are aiming to create a short disability-positive video about experiences of invisible disability from our staff, to share as part of our efforts to make CTR a more welcoming environment for new and existing partners alike. In an environment where lived experience can be so important for the work that we conduct, encouraging those experiences to be shared and inform our practice is critical.<\/p>\n<h2 style=\"font-weight: 400\"><strong>The Second Job: Living with a Chronic Condition<\/strong><\/h2>\n<p style=\"font-weight: 400\">One of the things I\u2019d love to talk to people about is how much of a difference a line manager or supportive colleague can make to your experience of disability. Those who suffer from chronic conditions \u2013 hidden or otherwise \u2013 might be familiar with the feeling of having a \u201csecond job\u201d, where managing your health becomes a full-time role in and of itself. I know I certainly am. Many of you may or may not know me as a sufferer of CFS\/ME. My condition\u2019s impact ranges from the minor where I can\u2019t get the hoovering done for a second week in a row, to more profound impacts where I\u2019ve missed birthdays, family gatherings, even full days of holidays, physically unable to get out of bed or the house. Nobody told me when I was diagnosed that I\u2019d rarely have a restful holiday again!<\/p>\n<h2 style=\"font-weight: 400\"><strong>Navigating Disability Identity<\/strong><\/h2>\n<p style=\"font-weight: 400\">I was diagnosed in my teens with my condition. Post diagnosis, I was switched onto a graded exercise programme that was a huge shock to my system. I went from swimming 20 hours a week to only being allowed to walk to the end of my road and back. It was jarring, as much as anything because despite what felt like a really severe response to an illness I didn\u2019t know existed \u2013 much less understood \u2013 nobody really used the term \u201cdisabled\u201d with me. After all, when I\u2019m well, I can be scatterbrained and occasionally a bit brain-fogged, but that\u2019s not too unusual. And in my teens, missing a bit of college wasn\u2019t really flagged as out of the ordinary either, even when I was missing half of my classes.<\/p>\n<p style=\"font-weight: 400\">Under a <a href=\"https:\/\/www.disabilityrightsuk.org\/social-model-disability-language\">social model of disability<\/a>, this lack of reference to being disabled made some kind of sense. At the point I first left with the new addition to my medical records, it wasn\u2019t really clear how impaired I would be, nor what shape my condition would take over time, or even what path my life would take and how all those elements would interact. It might\u2019ve been premature to label me disabled at point of diagnosis or even when trying first-line treatments, given that CFS\/ME (like many invisible illnesses) have a unique impact person-to-person.<\/p>\n<h2 style=\"font-weight: 400\"><strong>Doing the \u201cFirst Job\u201d with Hidden Disability<\/strong><\/h2>\n<p style=\"font-weight: 400\">However, as a result, it\u2019s only in recent years \u2013 since joining Cardiff University \u2013 that I\u2019ve come to see myself as disabled at all, and almost by the fortune of having disability-aware colleagues rather than by something designed to flag this to me. I\u2019ve found this is a common experience amongst fellow spoonies (a term used by some of the CFS community \u2013 you can read about Spoon Theory here: <a href=\"https:\/\/butyoudontlooksick.com\/articles\/written-by-christine\/the-spoon-theory\/\">https:\/\/butyoudontlooksick.com\/articles\/written-by-christine\/the-spoon-theory\/<\/a>) and others with long-term or invisible conditions. We might not ask about reasonable adjustments, or consider how we report our Bradford Factor because that\u2019s for <em>disabled<\/em> people and while we\u2019re different, nobody\u2019s stopped us to think about whether we are.<\/p>\n<p style=\"font-weight: 400\">When I joined the University, I started on part-time hours as I thought I was physically unable to do more than that per week. Despite literally thinking I wouldn\u2019t be physically capable of full-time work, it still didn\u2019t cross my mind to tick the HESA box that says \u201cdisabled\u201d when I filled in my HR record. It was only when I shared with my line manager at the time that I wanted to do more hours, but didn\u2019t feel able to take the risk with my health that we opened up a discussion about disability. They took the time to understand my constraints, my concerns and how I could manage myself with a few tweaks. They pointed out that if I felt un-able, then that should be enough to consider myself dis-abled.<\/p>\n<p style=\"font-weight: 400\">Clearly, I\u2019m not working part-time any more, and I embrace disability in a sensible way now. It\u2019s made a huge difference to my professional life and ability to progress, and has equally helped me manage my personal wellbeing in a way that actually means I miss out on less nowadays. A few workplace conversations opened up the world to me in a way that I wouldn\u2019t have imagined possible \u2013 and I wanted to write this call to action, and put together this video, to enable more folks to have those conversations and feel a bit more confident broaching what can be an awkward subject to start discussing.<\/p>\n<h2 style=\"font-weight: 400\"><strong>Invitation for Summer 2023<\/strong><\/h2>\n<p style=\"font-weight: 400\">What I\u2019d like from this blog is to speak to other people who are happy to share their experiences of unseen illness and disability. I\u2019d like to hear about the good, the bad, and the ugly, so we can put this together in a way that might enable more people to talk openly about their health and their wellbeing, and feel supported in the choices they make. I\u2019m hoping this will also be helpful for line managers and colleagues to help kick off some of those discussions, and maybe give them a bit more insight into how someone you work with might be juggling more than you realise.<\/p>\n<p style=\"font-weight: 400\">Over the summer, I would like to invite staff from across CTR to get in touch with me via email to arrange a chat and \u2013 if you feel up to it \u2013 a video discussion that I can edit together for the EDI group to support disabled staff and colleagues in the future. There\u2019s no pressure to participate, even if you just want your voice heard but don\u2019t want to take full part, I\u2019m willing to listen. You can contact me on <a href=\"mailto:dentonr3@cardiff.ac.uk\">dentonr3@cardiff.ac.uk<\/a> or on Teams Monday \u2013 Thursday. I\u2019d love to hear a bit more about the different experiences folks have had, and hope we can come together to create something really positive by September 2023.<\/p>\n","protected":false},"excerpt":{"rendered":"Advocating for Inclusion in Research The Centre for Trials Research Equality, Diversity and Inclusion (EDI) Group is a small group of volunteers from across the Centre who are passionate about [&hellip;]","protected":false},"author":6981,"featured_media":2622,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[7],"tags":[],"class_list":["post-2621","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events"],"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p7dIou-Gh","jetpack-related-posts":[{"id":298,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/side-pro-study-a-measure-to-identify-treatment-side-effects-in-adults-with-an-intellectual-disability-and-epilepsy\/","url_meta":{"origin":2621,"position":0},"title":"SIDE-PRO Study: A Measure To Identify Treatment Side Effects In Adults With An Intellectual Disability And Epilepsy","author":"Andrea Meek","date":"August 4, 2016","format":false,"excerpt":"Identifying treatment Side effects in adults with an Intellectual Disability and Epilepsy: Development of Patient-Reported Outcome Measure for identification of Anti-Epileptic Drug side effects (SIDE-PRO) Study Background We are conducting a study at Cardiff University to develop a patient report questionnaire on the side effects of anti-epileptic drugs in adults\u2026","rel":"","context":"In &quot;Questionnaire&quot;","block_context":{"text":"Questionnaire","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/questionnaire\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/08\/Hand-holding-tablets-scaled.jpeg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/08\/Hand-holding-tablets-scaled.jpeg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/08\/Hand-holding-tablets-scaled.jpeg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/08\/Hand-holding-tablets-scaled.jpeg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/08\/Hand-holding-tablets-scaled.jpeg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/08\/Hand-holding-tablets-scaled.jpeg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":2626,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/overcoming-barriers-and-facilitators-to-including-care-home-residents-in-research-recommendations-for-researchers\/","url_meta":{"origin":2621,"position":1},"title":"Overcoming Barriers And Facilitators To Including Care Home Residents In Research \u2013 Recommendations For Researchers","author":"Brittany Nocivelli","date":"July 27, 2023","format":false,"excerpt":"Background With an ageing population, older adults will have more complex health and social care needs and many of these older adults will be living in care homes. Despite the growth in care home populations, care home residents are often excluded from research. This results in research evidence that may\u2026","rel":"","context":"In &quot;Events&quot;","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2023\/07\/Brittany-blog.png?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2023\/07\/Brittany-blog.png?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2023\/07\/Brittany-blog.png?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2023\/07\/Brittany-blog.png?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2023\/07\/Brittany-blog.png?resize=1050%2C600&ssl=1 3x"},"classes":[]},{"id":1219,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/better-healthcare-through-more-inclusive-research-a-dissemination-event-on-innovations-in-clinical-trials-design-and-delivery-for-under-represented-groups\/","url_meta":{"origin":2621,"position":2},"title":"Better Healthcare Through More Inclusive Research \u2013 A Dissemination Event On Innovations In Clinical Trials Design And Delivery For Under-Represented Groups","author":"Victoria Shepherd","date":"December 13, 2018","format":false,"excerpt":"A vision for \u2018better healthcare through more inclusive research\u2019 During the past year, a project looking at innovations in clinical trials design and delivery for under-represented groups has been carried out by a group of researchers at Newcastle University as part of a NIHR CRN speciality cluster, and supported by\u2026","rel":"","context":"In &quot;Events&quot;","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"photo of roadmap of NIHRIO project","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/12\/Roadmap-of-NIHRIO-project-scaled.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/12\/Roadmap-of-NIHRIO-project-scaled.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/12\/Roadmap-of-NIHRIO-project-scaled.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/12\/Roadmap-of-NIHRIO-project-scaled.jpg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/12\/Roadmap-of-NIHRIO-project-scaled.jpg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/12\/Roadmap-of-NIHRIO-project-scaled.jpg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":1168,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/my-mental-health-journey-so-far\/","url_meta":{"origin":2621,"position":3},"title":"My Mental Health Journey&#8230;So Far","author":"Claire Johnson","date":"October 10, 2018","format":false,"excerpt":"My name is Claire Johnson and I\u2019m Head of Quality Assurance and Regulatory Affairs at the Centre for Trials Research Cardiff University.\u00a0 I am also the lead for Equality, Diversity and Inclusivity for the Centre. I am married with two 7 year old boys, one of which was diagnosed with\u2026","rel":"","context":"In &quot;Mind Brain and Neuroscience&quot;","block_context":{"text":"Mind Brain and Neuroscience","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/mind-brain-and-neuroscience\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/10\/FB_IMG_1539150990732.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/10\/FB_IMG_1539150990732.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/10\/FB_IMG_1539150990732.jpg?resize=525%2C300&ssl=1 1.5x"},"classes":[]},{"id":3067,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/humanising-health-care-sharing-real-life-patient-stories-about-vision-impairment-and-depression-with-eye-care-students\/","url_meta":{"origin":2621,"position":4},"title":"Humanising health care: Sharing real life patient stories about vision impairment and depression with eye care students\u00a0","author":"Claire Nollett","date":"February 13, 2025","format":false,"excerpt":"When asked which sense they would be most scared to lose, nearly 75% of people said their sight. It\u2019s not hard to understand why. Most of us rely on our sight for our daily routines, learning, work and hobbies. As a mental health researcher at Cardiff University, I\u2019m particularly interested\u2026","rel":"","context":"In &quot;Events&quot;","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2025\/02\/Vera-filming.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2025\/02\/Vera-filming.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2025\/02\/Vera-filming.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2025\/02\/Vera-filming.jpg?resize=700%2C400&ssl=1 2x"},"classes":[]},{"id":776,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/too-much-information-world-autism-awareness-week\/","url_meta":{"origin":2621,"position":5},"title":"Too Much Information:  World Autism Awareness Week","author":"Andrea Meek","date":"March 30, 2017","format":false,"excerpt":"Background This week (March 27th\u00a0- 2nd April 2017) is World Autism Awareness Week. Claire Johnson (Head of Quality Assurance and Regulatory Affairs\u2013 Centre for Trials Research at\u00a0Cardiff University) gave a very personal presentation to Centre for Trials Research colleagues on autism based on the Too Much Information film by the\u2026","rel":"","context":"In &quot;Events&quot;","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/George-and-Claire.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/George-and-Claire.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/George-and-Claire.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/George-and-Claire.jpg?resize=700%2C400&ssl=1 2x"},"classes":[]}],"meta_box":[],"jetpack_featured_media_url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2023\/07\/Rhys-Denton.jpg","_links":{"self":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/2621","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/users\/6981"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/comments?post=2621"}],"version-history":[{"count":1,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/2621\/revisions"}],"predecessor-version":[{"id":2623,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/2621\/revisions\/2623"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/media\/2622"}],"wp:attachment":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/media?parent=2621"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/categories?post=2621"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/tags?post=2621"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}