Our World of Work column aims to inspire others to find the confidence in finding their dream career by knowing what is out there, what is possible and how to get there themselves.
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She was always fighting a battle but her smile would never tell you so
– Nikki Rowe
Author of “Once a Girl, Now a Woman”
Hi, my name is Blayne and I work at Beacon For Rare Diseases as the new Digital Resources Manager on The Resources Hub. The Resources Hub is a 100% free e-learning platform that is full of exclusive content that guides patient groups through every stage of their rare disease journey. I’m responsible for the management of The Hub, which includes writing new guides, delivering content in a variety of formats and working with external partners to bring vital information to patient groups to help them achieve their advocacy goals.
The road to this position began back in 2016 when I took my first job as a Junior Digital Content Editor at C-4 Analytics. Writing has been my passion since I was little. It was my dad who encouraged me to consider employing my passion as a copywriter. C-4 Analytics is an automotive digital marketing agency, so my job was to write compelling content that helped local dealerships sell their cars. I realised early on that my true passion in the automotive industry wasn’t for the cars; it was for the families who owned and operated a dealership that’s been handed down for generations. I found joy in writing why someone should choose to shop at a family-owned dealership across the US and Canada. I highlighted the dealership’s family history, values and principles. The team would give me their “Why Buys” and it quickly became my specialty.
I always knew I wanted to work for a charity, but I put timings on that dream. I felt that I had to be 30 before I could land my dream charity job. Yet, at 25, I landed a position at Beacon as Marketing and Engagement Manager—five years earlier than planned! I knew the power of patient groups because they have been a lifeline for me, my family and my in-laws. My family and I relied heavily on Food Allergy Research & Education (FARE) when we learned that I was born with anaphylactic food allergies. I found myself and my in-laws relying heavily again on the patient group, Cranio Ribbons, when my niece was diagnosed with the rare condition, Craniosynostosis.
I felt like my career was soaring when I left America and began my dream charity job. Someone or something must have been looking out for me, because my current role prepared me for the biggest shock of all. I went from being able bodied to “disabled” overnight in May 2021. I was suddenly diagnosed with relapsing remitting multiple sclerosis (MS) at 26 and I was reeling. In my mind, every door seemed to slam shut—America, children, my ability. I feared for what this meant for my career and future. I knew the power of patient groups, so I immediately connected with groups for my condition and treatment. I felt broken, alone and hopeless.
Adult onset of a chronic illness shatters your plans and makes you realise what’s most important. You grieve for the life you had, who you used to be and what you used to be able to do. I used to believe that an invisible illness was a blessing, but I felt myself switching between seeing it as a blessing and a curse. The “old Blayne” could work long hours, commute long distances and rally from long nights.
When you suddenly get an invisible illness, you may look like the “old Blayne”, but you feel nothing like her.
Your priorities have shifted and what you can do alters. Your talent remains untouched, but how you let it shine is dictated by your perseverance and a supportive employer.
I credit my bosses and team at Beacon for empowering me during my darkest hour. My boss jumped into action securing a private session with an Occupational Therapist to help me learn how to work alongside my MS. He actioned every suggestion the Occupational Therapist made, such as purchasing a new chair with lumbar support and creating a personalised Traffic Light System that alerted him to my energy levels. He and the team continue to ask how I’m feeling with the MS and always send a supportive message on days when I’m having my infusion. They encourage me to take breaks and work to a schedule that suits my illness. I can’t thank them enough for supporting me at every turn of this MS journey. I’m still the Blayne they hired all those years ago. They believe in me and my talents. That is something I’ll never take for granted. They don’t see me as “disabled,” so I never have. That is one term I won’t accept as a label. I am more than my chronic illness.
Your career doesn’t end when working with a “disability.” I believe a chronic illness gives you a unique perspective. You realise everyone, whether they have a disability or not, is facing a challenge you know nothing about. Working with MS humbles you to your core. Time and good health aren’t guaranteed. Don’t waste a moment doing something you aren’t passionate about, because you are afraid of how your disability “could” hold you back. I refuse to see myself as disabled. My MS is part of me, not what defines me.
You are still in control even when your disease tells you otherwise. The narrative that you’re less than, undesirable or incapable at work because you have a chronic illness is a figment of your imagination. Your family doesn’t think that, your friends don’t think that and your employer does not think that. None of us can possibly do it all. We are all “disabled” in that respect. We can only focus on our unique abilities that excite us for our best chance at happiness, satisfaction and career success.
Find a job that plays to your strengths and an employer who empowers you to reach your potential. You aren’t your disease or “disability.” You've made it this far through personal courage. You can have a fulfilling career! Covid has opened the door to remote working, so seek opportunities that match your passion and ability criteria. You have so much to offer the workforce. As Billy Joel says, “Vienna waits for you.”
LinkedIn: Blayne Baker