It Took a Team for Me to Learn to Live with Rheumatoid Arthritis

Having a team of doctors and a community you trust can make all the difference when managing a chronic condition.

Before I received a diagnosis of rheumatoid arthritis (RA), I had never really seen a medical specialist. I was used to having any medical issues treated at a walk-in clinic.

The first time I really needed medical care outside of a walk-in clinic was when I was pregnant with my son, 3 years before my diagnosis. Going to the doctor wasn’t something I regularly did, and I definitely took that for granted.

When I got my diagnosis in 2015, at age 29, I went from seeing a healthcare professional once or twice a year to several times a week. I went from never seeing the same doctor twice to regularly relying on about a dozen medical professionals on a regular basis.

That’s because managing RA requires more than simply taking the right medications. It requires the right mix of nutrition, movement, and lifestyle changes, not to mention caring for your mental health and dealing with unexpected side effects.

RA is more than just joint pain, so it truly takes a team to manage it.

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Finding my care team

It took some time for me to find my team. When you live with a chronic condition and interact regularly with the healthcare system, it’s normal to have mixed experiences with doctors.

Many people can tell you that they’ve encountered ableism, racism, sexism, and other forms of discrimination from those they’ve trusted with their health. Sometimes, we don’t get a choice in who we receive care from.

I used to get nervous each time I met a new doctor. Would they be a good fit for me? Would they be dismissive or rude? Or would they be compassionate and informative?

Fortunately, I don’t need to feel uncomfortable anymore, as I’ve found a team of caring and compassionate individuals who help me manage my condition.

These include:

Rheumatologist

In the beginning, I expected my rheumatologist to provide me with all of the ins and outs of how to live with this incredibly difficult and complex chronic condition. I thought this would be my one-stop shop for all things RA.

However, most rheumatologists specialize in understanding your condition and what medications you’ll need. They aren’t likely to be the ones you turn to for questions about dietary changes you can make to reduce inflammation or what the best physical activities are when living with RA — and that’s OK.

Often, a rheumatologist can refer you to other healthcare professionals from other disciplines who may have advanced training in inflammatory arthritis.

I typically see my rheumatologist every 3 months, either in person or virtually. If my pain persists for more than 3 weeks, then I request to see her sooner as it may mean I am flaring or something else is going on. She is always an email away when I have a major question.

If I need a new doctor for anything, related to RA or not, I often ask my rheumatologist for a referral or if she knows anyone who has a deeper understanding of my condition.

My rheumatologist referred me to an arthritis center in my area, where I was able to find many other specialists with advanced arthritis training.

Primary care doctor

My primary care doctor (also called a general practitioner or family physician) is usually the first doctor I contact when I suspect something is going on. They play the role of “gatekeeper” for me to access other medical professionals like rheumatologists, psychiatrists, neurologists, or pain specialists, though sometimes my rheumatologist refers me to those as well.

Note that if your insurance provider doesn’t require referrals for care, you may not need to contact your primary care doctor for issues once you’ve established care with other specialists.

I’ll also visit my primary care doctor when I’m having a health issue that I don’t suspect is related to my RA. However, I always make sure my rheumatologist is informed, as they may have a better understanding of how my RA can make something simple, which my primary care doctor can treat, more complicated.

It’s important for me to have my primary care doctor and my rheumatologist communicate with one another.

Infusion nurse

My rheumatology nurse is the one who administers my monthly biologic infusion. She checks in on me every month during that infusion appointment to see how my disease activity is and if my medications are working effectively.

Often, my rheumatology nurse is the first one I call if I have questions about my medications or disease because she can be easier and faster to get in touch with. She always lets me know if I should be bringing something up with my doctors.

Of course, if your treatment doesn’t include monthly biologic infusions, an infusion nurse will likely not be on your care team.

Physical therapist

My physical therapist (PT) is one of the most important members of my rheumatology team.

When it comes to RA, motion is lotion, and you need proper guidance to avoid aggravating joints.

When I found a PT with advanced arthritis training, I was able to have a lot of my questions answered about how to exercise, relieve pain, and improve flexibility through movement. Plus, I learned more about my condition from them.

My PT is also an arthritis researcher who I partner with through Arthritis Research Canada. I recently participated in one of her studies, which helped me understand how a fitness tracker could help me manage my symptoms.

Clinical social worker

There is a big connection between my physical health and my mental health, and my clinical social worker was the person who helped me understand how to cope with my emotions.

At first, I didn’t really understand why I would need a social worker. Never having needed one before, I thought they were just for families with domestic violence or neglect. I quickly discovered that wasn’t the case.

Aside from helping guide me through the confusing process of the service I required from the Canadian healthcare system, my social worker gave me so much more.

Many social workers are trained to provide face-to-face counseling to help with anxiety, depression, and anger. They can also often assist in finding meaningful activities to replace those lost through arthritis and can provide support to caregivers.

Occupational therapist

Before RA, I had never even heard of an occupational therapist (OT), and now my OT is a key member of my team.

My OT helps me manage and come up with strategies to live with my most difficult and debilitating symptoms. They do this by making parts of my life easier or more arthritis friendly.

Occupational therapy has helped me with tips on how to manage rest, cope with fatigue, make cooking less painful, relieve pain during cleaning, and optimize my workspace for my health.

OTs can recommend splints, braces, orthopedic shoes, and other devices to make like with arthritis easier.

Registered dietitian

Diet will not cure RA and it rarely puts someone into remission on its own, but it definitely helps my symptoms and my overall health in big ways.

Eating a balanced diet is important for lowering inflammation, but there are a lot of different opinions out there as to what is healthy and what isn’t. A registered dietitian (RD) or registered dietitian nutritionist (RDN) will be able to guide you through evidence-based food guidelines and help bust myths about diet and RA.

Naturopathic doctor

Naturopathic doctors (NDs) combine conventional medicine with holistic approaches, and my ND is the one who recommends supplements to address any vitamin deficiencies or just for optimal health.

It is important to remember that natural medicine and pharmaceutical medications have their place and should work together in our fight against RA.

It is also important to remember that vitamins and supplements can have negative effects on someone, which is why it is best to consult with a naturopathic doctor and your primary care doctor about what’s best for you.

I live with a rare copper deficiency in addition to deficiencies in vitamin D, vitamin B12, and iron. My naturopathic doctor has helped guide me with the appropriate and best quality vitamins and minerals my body needs.

Pharmacist

Pharmacists have extensive knowledge of medications and they can be a lot easier to contact before my GP or rheumatologist.

I get my biologics from a Canadian biologics pharmacy called Biologics Pro, and all of my other prescriptions from a pharmacy near my home. The pharmacists at both locations are excellent resources and are often the first people I contact with questions about my medications.

Gynecologist

Ideally, all women living with an autoimmune disease should find a gynecologist who has an understanding of their conditions and medications. In addition, it’s important that all members of your care team, including your gynecologist, are aware of all medications you are taking.

I learned this lesson the hard way when I became quite sick from my Mirena hormonal IUD. The biologics I’m prescribed for my RA can suppress the immune system, leading to an increased risk of infection. However, the gynecologist I was referred to either did not understand the risks of an infection from the IUD and my biologic or wasn’t fully aware of my condition.

I was newly diagnosed at the time and did not understand my condition or my medications as I do now, so advocating for myself would have been a challenge.

If possible, work with your primary care doctor and your rheumatologist to find a gynecologist who has an understanding of your condition and the many ways it can impact your gynecological health.

Pain relief team

In addition to those already mentioned, my RA care team also consists of other providers who specialize in treating arthritis pain:

• chiropractor
• acupuncturist
• acupressurist
• massage therapist

My team goes beyond my healthcare professionals

Having a team of doctors and other dedicated and skilled health professionals to lean on is crucial, but gaining support from people who have been in your shoes is equally as important.

It took a lot of research and putting myself out there to find others going through similar struggles, but it was so rewarding in the end.

Support groups on Facebook and the Bezzy RA community have connected me with others going through similar situations. As patients, we speak a certain language with one another and it’s so important for us to connect and create community.

In addition to joining online communities, volunteering with the Arthritis Society and participating in studies through Arthritis Research Canada has been a great way for me to find my local community of people living with arthritis.

I’m so grateful for everyone who has been there for me along this journey, but I also know that the main player on my RA team is myself.

I had to dig deep to find the courage to accept my condition and the strength to fight it. No doctor could have done that for me.

Article originally appeared on June 2, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on May 27, 2021.