What It’s Like to Receive a Rheumatoid Arthritis Diagnosis in Your 20s

With the support of my doctor, my family, and my community, I know I’ll always find my way.

“So, no binge drinking or unplanned pregnancies,” the doctor chuckled after telling me I had rheumatoid arthritis (RA).

“Advice your mum would give you, I’m sure,” he added, giving my mother, who I’d brought along for moral support, a nod.

I knew it was coming. I was 28, but I still wanted my mom to sit next to me when I received the news of my diagnosis.

Strangely, I didn’t feel like breaking down into tears. Instead, I felt pure relief. I had suffered through months of pain and swelling joints. It was a relief to finally know what was causing it, even if that relief was short-lived.

When I woke up the next morning, my joints still swollen and painful, the gravity of receiving this diagnosis really hit me.

My future felt changed forever.

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Grappling with the uncertainty of my future

Up until now, I’d enjoyed life to its fullest. I liked to party and I’d studied and traveled extensively.

I’d lived life with such an ease that I hadn’t appreciated, and now it felt like I could no longer be carefree, I had to be careful.

It was the rules around drinking alcohol that hit me hardest initially. At 28, late nights weren’t quite as regular as they used to be and I didn’t make a habit of going hard on the booze as I did in my early 20s, but I enjoyed socializing with my friends.

The doctor’s orders were two drinks maximum. Any more in one sitting and I could damage my liver as a result of the medication I was on, he explained.

Would I need to turn down invitations or be the friend that skulks home before the party’s even started? How much fun could I have diligently sticking to two drinks, while my friends merrily sipped on pitchers?

I started staying in more.

Beyond my social life, it was the future that frightened me most. The diagnosis had made it seem even more uncertain.

I wasn’t quite ready to start a family yet, but I knew I wanted children in the next few years. The doctor had warned me I’d need to consult with him before planning to get pregnant, and I’d need to come off all my medication before I conceived.

The tablets could be harmful to any child I would carry, so I’d need to remain off of them for the entirety of my pregnancy. I was so reliant on them that I couldn’t possibly imagine not taking them for 9 months.

I fretted about how it would all work out, timing-wise. I was single at the time but wondered how I’d explain this to a future partner.

How would they feel about this extra pressure and planning? What would they think of me and my sore, inflexible body?

I worried potential partners would be put off and see my condition as a burden that wasn’t worth the investment.

Much like my body felt restricted in movement, my life choices now felt restricted, too.

I’d always loved to travel, but now any gap year plans or extended holidays felt out of reach. My life involved monthly blood checks, regular doctor’s appointments, and a list of daily medications.

I didn’t have any immediate plans to travel, but it felt as though the option had been taken away from me.

Learning to cope

In my experience, there’s an adjustment period after you receive a chronic illness diagnosis.

For me, it featured denial, crushing realization, and eventually acceptance (and even a little optimism).

My journey was undoubtedly helped by the discovery of Arthur’s Place, a Facebook group for young people with arthritis.

Suddenly, I had a peer group who were experiencing the same things I was. They had the same hopes, worries, and fears. They knew what it was like to feel limited at a young age.

The group gave me a community and a space to share my experience with people who understood.

Even when I wasn’t actively interacting with the group, just seeing the posts reminded me that I wasn’t in this alone. I had somewhere I could go for support.

My friends and family were incredible, but the people in the group understood what I was going through on a different level.

Over time, I began to realize that it was up to me to navigate the limitations of my illness and to make the most of my life in spite of them. I could let arthritis limit my experiences, or I could find a way around it.

I began socializing again, but I did it more sensibly. I limited the amount of alcohol I drank and often made plans for dinner instead of going out drinking.

I didn’t always stick to the two-drink maximum, but I was more careful about my alcohol consumption and found I could still enjoy myself without overdoing it.

Likewise, I still made travel plans. I didn’t jet off for months on end, but instead took short trips here and there. I dotted city breaks and sunshine holidays throughout the year.

I discovered that I much preferred this way of traveling, as I always had something to look forward to and it didn’t interrupt my appointments.

Looking ahead with hope

There are still elements of my future that remain uncertain. I’m still not at a point in my life where I’m ready to start a family, and I don’t know what my experience of pregnancy with a chronic illness will be when I am.

What I do know is that I will navigate the challenge in much the same way as all of the other challenges.

With the help of my doctor, the support of my family and friends, and the guidance of my online community, I’ll find my way.

Receiving a diagnosis of a chronic illness like rheumatoid arthritis in your 20s can feel like an extremely life-limiting change. However, with time, acceptance, and the support of others, you too can begin to find a way to manage these limitations in a way that doesn’t feel quite so restrictive.

Article originally appeared on February 2, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on February 1, 2021.