Patient Journey-Yaideliz Acevedo
Credit: Yaideliz Acevedo / Tatiana Ayazo

This story was told to CreakyJoints by Yaideliz Acevedo, a 23-year-old college student and new mom who lives in Newark, New Jersey with her boyfriend and son. Yaideliz works at an animal hospital and has recently been involved with a project getting kids off the streets, making shelters for those without homes in Newark.

Here is Yaideliz’s story of being diagnosed with rheumatoid arthritis at age 21 and how she hopes her story will resonate with others who don’t fit the “typical mold” of an RA patient.  

***

I was 38 weeks pregnant with my son when I started having really bad inflammation in my hands. They were swollen and painful, but my doctor told me it was a normal part of pregnancy. It’s carpal tunnel, I was told. “It’ll go away. You just have to wait,” my doctor said.

But the pain in my hands didn’t go away. Instead, it got worse after I gave birth to my son. During the first few days at home with him, there were times the pain and stiffness were so bad I couldn’t fasten the snaps on his onesies or close his diaper. He weighed only seven pounds, but I struggled to pick him up. I went to the doctor and again they told me the pregnancy was to blame. They said it was my hormones “getting back to normal.”

Finally when my son was one month old and things weren’t better, I’d had enough. I told my doctor, “I’m still in a lot of pain. My hands are still really stiff. I don’t think this is normal.” They agreed to do some blood tests.

At first, they thought it might be lupus, an autoimmune disease that can cause joint pain, stiffness, and swelling, among other symptoms. They asked if I had a family history of arthritis, but no one in my family has it. In fact, I have a fairly healthy family line. Luckily when they sent out the bloodwork, they screened for the right markers, and a week later when the results came back, they told me I had RA.

‘Too Young’ to Have RA

I was only 21. I had no idea what RA was. No one I knew had it. They sent me to get X-rays and did additional bloodwork just to double check that I had the right diagnosis. When I told my parents about it, they said, “There’s no way! You’re too young. You just had a baby! Arthritis is for older people.”

My primary doctor didn’t give me much information, just the test results and a referral to a rheumatologist. Of course, I Googled, but I didn’t know enough about what I was looking for to really understand the information. When I went to the rheumatologist appointment, I was the youngest person in the waiting room by far. An older woman asked if I was there for my grandpa. I said, “No, I’m here for myself!” Even the X-ray technician said I was too young to have RA: “I’ve never seen someone so young have this.”

When people assume it’s not possible for me to have rheumatoid arthritis because of my age, I get a little annoyed, but then I realize and understand that arthritis has a general stigma as an “old person’s disease.” As frustrating as that is, it’s the sad reality. It’s a big part of why I want to share awareness and educate others that this disease affects people of all ages.

My first rheumatologist didn’t help me understand RA much more than my internet search. They just prescribed medications and sent me on my way with instructions to follow up in three months. But I was so naive about it all that I didn’t follow the treatment orders. I thought, “I’m young, I’ll be fine. I don’t need meds. This will pass.”

But, not surprisingly, I just kept getting worse.

My symptoms got bad enough that I couldn’t feed my son. I had to have help from family members just to take care of him. That’s finally what did it for me. I realized I needed to know more about what was going on with my body and take it seriously.

I started paying attention to my treatment. I researched RA, I took my medications. I found ways to make my life more livable. I focused on my diet and took note of what seemed to make my symptoms worse. I cut down on salt, sugar, and carbs and added in more vegetables. I lost weight.

I’ve been on a number of medications — so many that I have trouble remembering them all. As time progressed, I changed from oral medications to injections back to oral medications. Treatments would work for a couple of months and then stop. It was a little like a rollercoaster.  I injected myself weekly, monthly, but none of the treatment protocols seemed to work long-term. I’m still trying to figure out the right treatment now.

I switched to a new rheumatologist who takes me seriously. Our relationship is great, and she has been such a blessing throughout this journey.

The Reality of Living with Rheumatoid Arthritis

There’s not a day that goes by that I can say I’m 100 percent pain-free. It’s just become a part of daily life for me. There are certain things I can’t do right now. I can’t completely lift my left arm, which means I’m not able to carry my son in certain ways. I used to play volleyball, but I can’t do that now.

At my job I work with animals, and that can be pretty physical. I’m a veterinary technician and need to be able to move quickly and be on my feet a lot. Little by little that’s getting harder to do. My boss has been incredibly understanding about my condition. He modified my job responsibilities and transitioned me into doing more front office tasks.

I’ve also started eating a keto diet. Sugar seems to be a big trigger for flares for me, so making a change to a low-carb diet helps me manage my symptoms better.

Seeking Community and Support

Any time I go to my rheumatologist or any doctor for my disease, I’m the youngest patient there by far. It’s even rare to see someone younger than 40. I’ve accepted my diagnosis, and am figuring out how to thrive with it, but it’s still frustrating not to have connections with other people my age who has been through what I’ve been through, who can talk to me and guide me, give me advice, and relate to me.

My search for that community is how I found CreakyJoints. I went on Google and typed in “young people with RA.” And CreakyJoints popped up. The articles drew me in right away. I read personal stories from people who talked about the realness of RA and what they did in their everyday lives that helps. Those are things I’m now trying. I value their words and advice because they’re going through what I’m going through, and in most cases, for much longer. They have solid advice I can use.

Eventually I heard about patient advocacy opportunities through CreakyJoints and its patient-centered research registry, ArthritisPower. I knew I knew I wanted to become a voice for others living with RA. I’m part of a panel that’s focusing on how to build a more inclusive and responsive ArthritisPower research network so we have people of all different ages and races and ethnicities involved in arthritis research. I love it. It’s amazing to be connected with people from all over the country and the world and hear share how they were diagnosed, how they handle their arthritis, and what helps them overcome challenges.

In one meeting when we were discussing the doctor-patient relationship, I was able to share an experience I had with my first rheumatologist who seemed to be going through the motions with the standard RA care without really seeing me and taking into account my lived experience. When I questioned whether the treatment he suggested would work for me, he told me I didn’t know what I was talking about.

We talked about how I’m young, so I can easily feel like doctors know best no matter what. But I’m the patient, and I know what I feel. By talking this through with other people who have been in my shoes, I’ve felt more encouraged to speak up and advocate for myself at the doctor.

My Advice for Others Living with Rheumatoid Arthritis

It gets easier

Learning how to navigate your diagnosis may be rough at first, especially if you’ve never heard of RA or don’t know much about arthritis in general. But once you do some research, take your medications, and adjust your lifestyle, it gets better.

There will be bad days (and that’s okay)

 You can manage RA well, but it’s not going to go away 100 percent. There are going to be hard days. But just because there’s a storm doesn’t mean there’s not a rainbow at the end of it.

Don’t let stigma guide your actions

Just because it’s not common for a young person to have this disease doesn’t mean that it’s impossible. I remember when I was first diagnosed, I didn’t believe it. I thought arthritis was for “old people only.” Ultimately, that did me more harm than anyone else, because my disbelief kept me from following my treatment plan, and ultimately, much more pain.

Be open and honest at work

If you have a physical job like mine, it’s especially important to approach your supervisors and be truthful about your health and how it affects you. That’s goes along way. For me, having open communication and keeping them in the loop definitely makes things easier and the work flows better.

If I Could Say One Thing to My Newly Diagnosed Self …

I would tell myself, girl, do your research. Take that treatment. Take your RA seriously. It’s a big deal, but you got this.

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

If you’re interested in being a patient advocate with ArthritisPower and helping our efforts to engage more diverse patient groups in research, check out our Patient Engagement Advisor Program.