Becoming Someone I Feel Proud Of: A Conversation with Ali DiGiacomo

I’ve been a fan of Ali DiGiacomo’s videos for a long time. Whether she’s sharing a joyful injection video, getting ready while talking about a relatable perspective on health, or making fun of being sick in a hilarious, absurd way, her videos bring so much joy and insight into the world of chronic illness. I had the pleasure of speaking with Ali in the middle of her Airstream travels, which you can read about below!

Julia Edelman (JE): So you said you’re in Arizona now—how long are you going to be there?

Ali DiGiacomo (AD): We’re in Tucson until this coming Monday, then we’re going to Phoenix for two weeks, and then Petrified Forest. So we’re in Arizona for the next month.

JE: Nice. Do you have a plan, or are you just kind of feeling it out as you go?

AD: We’re trying to hit all the national parks—not this year, but in the long run. We want to see all of them, so we kind of follow them as we go.

JE: And you just started this Airstream adventure recently?

AD: Yeah. We were originally looking at houses in the Catskills—tiny A-frames and cabins—but a lot of them were being bought up by people turning them into Airbnbs. We wanted to actually live there because we had spent a month or two there the year before.

So last August we put in a bid on a house. I literally said, “If we don’t get this house, we’re getting an Airstream.” And we didn’t get it. The next day we called an Airstream dealer, and had the trailer within a week.

It felt like a blessing in disguise. That was last September, so we’re still new to it—about six months in.

JE: When did your chronic illness journey begin?

AD: I have rheumatoid arthritis, and I also have something else we still haven’t been able to figure out. I have really intense chest pain—worse than the RA—and it’s been going on for about 12 years. It feels like a heart attack, and we still don’t know what it is. It doesn’t seem connected to the RA, so it’s very strange.

I was diagnosed with rheumatoid arthritis when I was 15, living in Connecticut. I was a competitive swimmer—Junior Olympics level—and it was my whole life. Then one day my knee filled with fluid and I couldn’t even stay afloat in the water.

We thought it was an injury at first, but swimmers don’t really get injured like that. They drained my knee, did MRIs, and eventually found a tumor. They removed it and it was benign, so I went back to normal for a while.

I didn’t tell anyone at school what had happened. It all happened over a summer. But my swimming career kind of collapsed after that surgery.

Then six years later, in college, it came back in a much more severe way. I had to quit my first job after graduating because I was working in film and on my feet all day. My knee kept filling with fluid.

At first I was in denial because it was only in one joint, and RA usually affects multiple joints. I got tested for everything. Eventually, after another surgery, they confirmed it was rheumatoid arthritis. My joint was severely damaged, and I had to start medication.

I didn’t know anyone else with RA or any chronic illness at the time.

JE: I can relate. It took a long time for me to share my diagnosis. I think a part of me was also in denial.

AD: Yeah, I kept my diagnosis secret for a long time, so a lot of people didn’t even know. When I finally started posting about it, things shifted.

Now most of my friends also have chronic illnesses. Earlier on, there were definitely tensions—I was very negative at times, and I understand that can be hard to be around.

But now I really value friendships where people can actually understand what you’re going through. It’s different talking to someone who has been on the same medications or experienced the same side effects. That kind of understanding is hard to replace.

JE: How did that lead to sharing videos online?

AD: Around 2017 or 2018, I made an Instagram account just for my chronic illness. I wanted somewhere to vent, and I also wanted to share something positive. I started posting under hashtags like methotrexate and slowly found other people going through the same thing. That alone made me feel less isolated.

Then I started making funny videos about it. It helped me cope, and it also made other people laugh. During COVID, one of my videos went viral.

JE: Are there certain kinds of videos people resonate with most?

AD: Definitely the mental health side. We can talk about pain all day, but the hardest part is what it does mentally—especially with invisible illness, because people don’t always believe you’re struggling.

People really connect with dark humor. There’s something about laughing at it because otherwise it can feel unbearable. And it also just helps people feel less alone. There are thousands and thousands of us, but it often feels isolating until you see that community.

JE: Your videos have a lot of dancing and joy in them. Have you always been like that?

AD: I’ve definitely come out of my shell more. I went to film school and did acting classes, but making these videos made me way more outgoing and expressive.

There was a period where the illness kind of took over my identity, but creating and sharing helped me feel like myself again. I went from being really quiet in high school to becoming more loud and outgoing and the person I am today. And I’m very proud of her.

Speaker: What has it been like traveling with chronic illness?

AD: It’s complicated. I’m on Medicaid because I freelance, and they won’t ship my injections outside of New York. So I’m actually going off my immunosuppressants while traveling.

I chose traveling over staying in one place for medication access. I didn’t want the illness to stop me from doing this. My partner and I had wanted to do this since 2019.

But it’s risky. I’m essentially unmedicated for the first time since 2018. We’re going to see how it goes.

When I traveled in Italy before, it was already difficult—keeping medications refrigerated, moving between cities, constantly planning around it. Even in the Airstream, we have to manage refrigeration constantly. It takes up space and energy.

Sometimes I just want a break from doctors, from injections, from thinking about it all the time. Even if it’s just for a few months.

JE: What would you say to people who want to travel but are afraid because of health conditions?

AD: I’d say: make a plan with your doctor. Talk to your specialist ahead of time. See what medications you can bring, whether you can get 90-day supplies, whether you can switch formulations that are easier to travel with.

Have a plan A, B, and C. And be honest with your doctor about worst-case scenarios.

But I wouldn’t let fear stop you. Prepare as best as you can—but still go. Bring medication, bring backups, bring what you need. And accept that sometimes things will go wrong and you’ll deal with it when it happens.

I’ve been sick while traveling before, and I just had to rest for a few days. It wasn’t ideal, but it was still worth it.

JE: What are your small joys right now?

AD: Coffee. Every morning I look forward to it. I call it my “first sip.” I even post it on Instagram—like a little ritual. I dance and have my first-sip. Even something like whipped cream in my coffee can completely change my day. It’s small, but it makes me really happy.

You can follow Ali on Insta (@AnotherDayWithRA) or on TikTok! (@AnotherDayWithRA). She also has her own fitness app, which you can check out here!