On World Arthritis day 2021, I shared a 60 second video of how rheumatoid arthritis has affected my life over the last nineteen years.
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❤️As a storyteller, what I want to do is show you the “hero’s journey.”
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I want the video to start with all the painful and difficult parts of living with RA, then I show how I “overcame” them or “defeated” them, but I can’t.
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🙌 Because that’s not my truth, and it’s not the truth of many living with rheumatic diseases.
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YES, I’ve had some incredibly happy moments over the last 18 years, ones I will treasure forever! And YES I’ve also had horrific lows, moments where I wasn’t sure I could handle any more.
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The transitions between these highs and lows aren’t often linear or logical, they can be abrupt and disorienting.
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It can be hard to find your bearings when you’ve lived with it so long you don’t even know what a “normal” day is supposed to look like!
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🌟 But all of that said, thanks to Acceptance and Commitment Therapy and other tools I’ve learned as an OT as well as therapy patient, at age 40 today I feel better equipped than ever before to ride the highs and lows of life with rheumatic disease.
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And I feel more fortunate than ever that I’ve build a business where I can provide evidence based tips for living well with rheumatic disease, alongside heartfelt social and emotional support.
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🔥 On world arthritis day 2021, I simply hope to shed light on the highs and lows of life with rheumatoid arthritis *beyond* joint pain!
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This sound in the video was created by TikTok user Xbibii.i and includes audio from the movies The Lion King, Finding Nemo, King Fu Panda and the soundtrack from Up.
Additionally, I shared the following images and reflections about the impacts of rheumatoid arthritis beyond joint pain:
I’m sharing what RA is *really* like versus what many people *think* it’s like.
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𝗛𝗼𝘄 𝗽𝗲𝗼𝗽𝗹𝗲 𝘁𝗵𝗶𝗻𝗸 𝗥𝗔 𝗮𝗳𝗳𝗲𝗰𝘁𝘀 𝗺𝘆 𝗹𝗶𝗳𝗲: Joint Pain.
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𝗛𝗼𝘄 𝗥𝗔 𝗿𝗲𝗮𝗹𝗹𝘆 𝗮𝗳𝗳𝗲𝗰𝘁𝘀 𝗺𝘆 𝗹𝗶𝗳𝗲:
✅ – Joint pain
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✅ – Fatigue & Brain Fog
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✅ – Other Systemic Symptoms (eye, heart, lungs)
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✅ – Social effects (misunderstandings from friends/family, affect on dating and romantic relationships, some positive effects – meeting others in the chronic illness community!)
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✅ – FInancial effects (extremely expensive medications)
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✅ – Stress and overwhelm (often from uncertainties about which routes to choose)
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✅ – Difficulty taking care of self (the above mentioned symptoms can make the smallest of tasks difficult)
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✅ – Work Limitations (potential need to pivot career paths or otherwise adapt your work tasks to your new health status)
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And so so much more that I couldn’t even fit into the pie chart, including:
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🌟 – Existential questions (why are health issues so random sometimes?)
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🌟 – The process of confronting my own internalized ableism
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🌟 – Time spent on “boring self care” tasks required for being a healthcare patient.
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As an occupational therapist and RA patient, I know that it’s possible to THRIVE and live a meaningful existence *alongside* rheumatoid arthritis.
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But it takes work. A LOT of work!
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It takes:
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✅ – 𝗧𝗶𝗺𝗲 (time to do all the boring self care tasks involved in being a chronic illness patient; time spent making appointments, talking to insurance, getting meds; time to complete lifestyle habits that help such as exercise)
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✅ – 𝗖𝗼𝗴𝗻𝗶𝘁𝗶𝘃𝗲 𝗘𝗻𝗲𝗿𝗴𝘆 (learning about new ways to manage my condition and keeping up with the latest research)
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✅ – 𝗘𝗺𝗼𝘁𝗶𝗼𝗻𝗮𝗹 𝗘𝗻𝗲𝗿𝗴𝘆 (investing in therapy and coping tools for how the condition affects my mental health, energy devoted to un-learning ableism and un-learning assumptions I previously held about the relationship between healthy and happy)
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✅ – 𝗘𝗺𝗼𝘁𝗶𝗼𝗻𝗮𝗹 𝗮𝗻𝗱 𝗦𝗼𝗰𝗶𝗮𝗹 𝗟𝗮𝗯𝗼𝗿 (to educate friends/family/loved ones/coworkers about the condition)
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What would you add to this list? Let me know!
