By Kira Rankin, as told to Allison Bolt
Not a lot of 21- and 22-year-olds are walking around saying, “Oh, man, I have massive joint pain.” But I was. At 18 years old, I started having a lot of pain in my senior year of high school. It took years to get diagnosed with rheumatoid arthritis (RA) and find the perfect care team. Why? Well, my first step was getting a doctor to believe that my pain was more than “normal growing pains.”
My journey to finding a care team was not a quick one, by any means. It took years of searching and switching specialists, but it was entirely worth it. Through it all, I learned that the most important part is to be patient.
What My Journey Was Like
Finding a care team started with my primary care doctor, who’s actually an internal specialist. She suggested I see a specialist called a rheumatologist for my joint pain and recommended one.
In the beginning, rheumatologists would tell me I was making up my pain because I was too young or that it was all in my head. Each one would see me and then pass me off to pain management, and then pain management would pass me right back to them.
I wasn’t getting anywhere because it was a cycle of rheumatologists and pain management handing me off to one another. Every time one didn’t click, my primary would recommend the next one I should try. Over the years, I’ve tried three rheumatologists altogether, and each one I found through my primary care doctor’s recommendations.
Finally, my primary recommended one more rheumatologist. He was the one. Now, I have a wonderful rheumatologist. I’ve never had a doctor that’s as diligent with a patient as he is. He’s always on top of my bloodwork and keeping me on my medications.
Finding a new rheumatologist wasn’t the only part of my journey. I also changed to a new therapist. I was with my therapist at the time for years, but she was no longer meeting all of my needs.
I was really anxious to “break up with my therapist,” as people say, because I didn’t want to offend her. I cared about her, and I worked with her for so long. But I felt like I had this new chapter in my life, and I just needed something new. I was having a lot of trouble with people not believing me and my pain, and I needed support for that.
I didn’t know what to do. I talked to my mom about it. She said, “You know, it’s OK if you want to change your therapist. You can change your therapist, not just your primary or rheumatologist.”
It was an eye-opening moment. So I started googling new therapists in my insurance network. My therapist is pretty young, so she had an online presence.
As scary as it was making a big jump to find a new therapist, I really clicked with the first one I tried right away. I’ve been with her for around 8 years now, and she’s the support that fits my needs.
She helps me before, during, and after appointments with other care team members. Her support helps me through my visits with other specialists, even though she’s not in the room with me.
Since the beginning, my primary care doctor has been there, and she’s helped me along the way. I like to call her my coach because now that I have my specialists in place, she’s my advocate. As the coach of my care team, my primary doctor keeps track of my other specialists, makes sure my care plan is in line with my preferences, and discusses anything I might be unsure about with other specialists. I think it’s important to have another specialist that I really trust that I can ask questions of and get a second opinion from.
What Makes a Great Care Team?
After a long journey, I have an RA care team that fits my needs. Each member plays an essential role. My team includes:
- A rheumatologist. Look for a specialist who’s patient, who pays attention, and who’s willing to find what works best for you, no matter how long it takes. When I finally found a rheumatologist committed to figuring out what medications work best for me through a lengthy trial and error process, I knew he was the right fit.
- A primary care doctor. Look for a primary care doctor who knows everything about your needs and advocates for you. My primary doctor is the coach of my care team. If something doesn’t feel right or if you want a second opinion, your primary doctor can help you make a game plan.
- A therapist. Look for a mental health professional who meets all of your needs and has RA knowledge and experience. My therapist is an extension of my rheumatologist and primary doctor because she supports me through the many doctors’ appointments. Don’t be afraid to take a leap and switch therapists if they aren’t meeting all of your needs.
- A support community. Look for a community, online or offline, of people who also have chronic illnesses who support each other.
Thanks to social media, finding an online support community to add to my care team was much easier than finding the right specialists. I used hashtags to find other people with chronic illnesses across the country on social media platforms, and I’ve formed long-lasting friendships.
This online community of supportive friends is an essential part of my care team. These are the people who understand me the best, and I’ve never even seen them in person. They know me and support me so well. Sometimes, they know how I’m going to move the next day better than I do.
The Key to Finding a Care Team
If I could go back and give myself advice before I took my first steps on a journey to finding the right care team, I would say two words: Be patient. It’s going to take time. I went to doctor after doctor, month after month.
These months and years of patience were entirely worth it the moment I found my current specialists. When you finally find the right doctor, you feel this wave of “someone believes me. Someone wants to help me, finally.” Be patient, and it will all be worth it.
Photo Credits: katleho Seisa / Getty Images, Randy Rankin
Kira Rankin, Cleveland.