The start of a new year heralds a time for new hopes, beginnings, and celebrations. This should have been especially true for the January of my senior year of high school.
But during a bitterly cold and snowy Chicago winter day in January 2005, the only thing I was “celebrating” was a diagnosis that confirmed that the mysterious symptoms I had been experiencing for a few years were real. I had rheumatoid arthritis, an autoimmune condition that was causing joint pain and inflammation because my immune system was attacking itself.
So, as an 18-year-old, my new beginnings that year consisted of prescription medications, supplements, lifestyle changes, alternative therapies, and countless medical appointments.
Starting a Biologic Medication
Six months later, as my classmates and I received our hard-earned high school diplomas, I was more preoccupied by a smaller and far less glamorous piece of paper. This one promised to relieve the pain and inflammation that throbbed through my feet as I walked down the aisle of my high school commencement ceremony. It was a prescription for my first injectable medication, a biologic drug that marked a new phase in my treatment regimen.
Rheumatoid arthritis — and other inflammatory types of arthritis — often needs to be managed with medication that tamps down the overactivity of the immune system. These medications are known as disease-modifying antirheumatic drugs (DMARDs). Some of them you can take as pills, but others need to be injected via a syringe or an injector “pen” or be infused via an IV at a doctor’s office or hospital.
While my friends were learning all about their college campuses, meeting new friends, and figuring out their majors, I was focused on learning how to give myself injections of this new medication.
For someone who never sprained a ligament or broken a bone — let alone had any type of surgery or ailment outside of the childhood norm — it was a traumatic experience.
A Lonely Journey
Let me remind you what 2005 was like for someone living with a chronic illness. There were no #Spoonie hashtags or tongue-in-cheek TikToks. Before the age of blogs dedicated to everything arthritis, Facebook support groups, arthritis influencers, and other avenues of connection that are so readily accessible to us now, I knew nobody — no one my age, no one in my family, and no one in my circle of friends — going through the same experience I was.
Now more than 15 years later, I’ve taken the steps to put myself out there, share my story, and connect with others. When I started looking for fellow patients like me on Instagram, it was surprising and refreshing to find a community of people who was willing to be so candid with the rest of the world about what they were going through.
Exhibit A: Instagram ‘Injection Videos’
Once I got past the inspirational quotes and sarcastic memes, I started noticing an Insta trend among people with autoimmune arthritis like me: medication injection videos.
It was the very act that I was so afraid of when I got that first prescription — and here were people just going for it, right there out in the open on social media.
Some videos depicted “virgin” patients, filming themselves learning to administer an injectable medication for the first time; others were of veteran patients who were switching medications. They seemed nervous and hopeful to try something new.
These were things I never had access to at the start of my patient journey. I couldn’t help but think how much more comfortable I might have been if they were available to me back then.
When I started my first biologic, the autoinjector pens — which make the injection process a lot easier — were not yet available. The drug’s instructions came with a CD that offered a visual step-by-step guide on how to administer the injection. A proper, professional woman demonstrated how to prepare the injection area with an alcohol prep pad and position the syringe at a 45-degree angle.
One thing missing, though, was the authenticity of the experience. Since it was a staged video and not a real patient like me, it didn’t address the feelings (physically, mentally, and emotionally) that the injection brought on. It didn’t make me feel less alone.
Even though I have been on this journey for 15 years and can be considered more experienced in living with this disease to some, I sometimes find myself back to square one mentally and emotionally when beginning a new treatment plan.
Now, it should almost go without saying that patient self-injection videos cannot replace a health care provider’s guidance and no one should be following them for medical advice. (That’s what your doctors and nurses are for.) But for me, they help make the injection process seem less daunting and way more normal.
I wanted to know more about some of the people behind them, so I reached out to some fellow patients, who each had their own reasons for sharing their injections on Instagram and TikTok.
Liv: Making It Public Makes It Normal
Liv, who was diagnosed at age 4 with juvenile idiopathic arthritis and is now a fitness trainer, has shared videos of her injecting her biologic on her Instagram page MoveToLiv. When I reached out to her about why she started posting them, she told me that some of her closest friends were unaware of her weekly injections.
“I was very isolated, very alone, and sometimes depressed when I’d inject in private.” For Liv, administering her injections publicly normalizes it by “creating a dialogue around it with others who aren’t privy to our day to day.”
Aashi: Focusing on the Future, Not Fear
While I was terrified of giving myself injections at first, for Aashi — who shares methotrexate (MTX) injection videos on her account SpoonieandSpoonie — fear was not an issue. She spent 10 years of her life in pain, getting dismissed my doctors, and spending thousands of her tuition money at clinics (she was uninsured). “Getting relief was the only thing on my mind and I was all about it,” she told me.
Up until recently, Aashi’s husband Romey did the injections for her. In this video, Aashi shares how she took the plunge in doing her own injection for the first time and how exhilarating it felt. She shares her diagnosis of rheumatoid arthritis and fibromyalgia, tips, the process of preparing the syringe and injection site.
Ali: Finding the Positive
For Ali, a filmmaker and certified personal trainer at AnotherDayWithRA, injection videos helped her change her outlook on her disease. “I do need this medication and it does make me feel better in the long run. If I didn’t film myself, I’d most likely just sit there alone in my room injecting myself and feeling down about it,” Ali told me. By getting creative, she realized that she “appreciates it more, rather than focusing on the negative aspects.” In one of her videos, she shares her entire arthritis journey timeline with rheumatoid arthritis, answers community questions, and shows how she preps for her injection.
Cheryl: Stop the Medication Shaming
In a recent TikTok performed to Demi Lovato’s “Sorry Not Sorry,” Cheryl — an occupational therapist, podcaster, dancer, and mother who provides life hacks and courses among other things at Arthritis_Life_Cheryl — addresses medication shaming. “There should be NO shame in taking prescription medication for your condition,” she posted, adding that “if anyone tries to shame you for taking ‘scary’ medications, send them my way and I’m happy to provide some information that might help them have a more balanced view.”
She started posting injection videos after she shared photos of her infusion appointments on a whim and was flooded with comments from people who said it made them feel less alone. When she saw fellow RA patient Ali (from AnotherDayWithRA, above) doing dance injection videos on Instagram and TikTok, Cheryl felt inspired to do the same.
Brianna: Confidence to Forge Ahead
Brianna, who chronicles her journey at ThatGirlWithArthritis, takes medication not only for arthritis but lupus too. “I am always stressed I’m not making the right decision. I always try to stay hopeful and positive, but it still is scary at first,” she says. In a recent video, she addresses the importance of others not making assumptions about invisible illness. “Just because someone doesn’t look or act like they are in pain doesn’t mean they aren’t in pain,” she shares.
Paulina: Spreading Social Support and Spirit
Paulina is a certified yoga instructor and dancer whose journey with rheumatoid arthritis you can follow at With.Paulina. She started posting videos of her weekly methotrexate injections because “when I first started injecting I didn’t see any videos out there, and I think it would have helped me go through those somewhat scary moments if I saw how others are making it look fun and easy. Social support and spirit help so much in these situations.”
Sarah: Shining a Light on Juvenile Arthritis
If you think injections are overwhelming for an adult with arthritis, imagine what they might be like for younger children and teens — and their parents. Sarah, a competitive swimmer who was diagnosed with juvenile idiopathic arthritis at age 12, takes a biologic every week and uses her platform, JRA__Warrior, to raise awareness. Part of why Sarah shares these videos is to “help other children who are afraid of doing their injections and to help parents of children with juvenile arthritis understand that their child is not being overdramatic when they say that they are afraid of injection night.”
Our New Normal
People who don’t live with these conditions and take these medications to treat them can’t begin to understand what it really feels like. And explaining yourself over and over is exhausting. “We in the chronic illness community can all empathize with the lack of feeling heard or seen, and the back and forth between ‘Do I explain my condition?’ to ‘Do I save my energy?’” says Liv from MoveToLiv.
At this current time, I find myself potentially needing to start a new biologic. I am grateful to have discovered other patients on Instagram who are currently taking this drug and can provide some insight into their own experiences. I am also thankful for others who can empathize with my nervousness about starting a new therapy.
Injection videos may seem like the next big trend to onlookers on the outside and even on the inside, but they’re so much more than that. I think they’re leveling up the patient experience with a new form of creative expression and storytelling. They’re normalizing an experience that not many people see as normal.
But for patients like me, the ones you see here, and the countless others who are finding their way on their own patient journey, it is our new normal.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.