5 Things to Do When You're Diagnosed with Rheumatoid Arthritis
It was the summer of 2019, and I went to my doctor's office with my 23&Me results in hand, worried that the fact that I had elevated rheumatoid arthritis risk factors paired with my wrist pain at the time meant that I did indeed have the disease.
"We can test you for it, but it's unlikely you have it," my doctor said after the exam. My swelling was only on one hand, and I was typing quite a bit -- so I probably didn't have it, especially since I was twenty-six and otherwise healthy.
Fast forward to six months later, and I came back in with way more swelling -- and got my positive diagnosis for rheumatoid arthritis.
It was a little less scary because RA was something I had suspected at this point thanks to my extensive Googling and perpetual hypochondria (which ended up leading me to my diagnosis this time!) but the beginning of my RA journey was a bit rocky.
Here's what I would recommend as your first five steps. I wish someone had told me these and guided me through this process -- so I hope you find them helpful!
Step One: Spend Some Time Reflecting, Prioritizing, and Seeking Support
When you get your rheumatoid arthritis diagnosis, it's important to spend some time just absorbing what's going on and what this diagnosis means for you and your life.
When I read about how RA was incurable and how people lived with lifelong pain -- it was a bit of a shell-shock.
According to the World Health Organization, about 50% of the people who get an RA diagnosis are unable to work full-time after ten years. It’s a serious disease, and also one of the most common autoimmune diseases, and about 1% of people in the US have rheumatoid arthritis. (So, hello fellow RA pals! Let’s hang.)
Anyways -- this stuff is serious. So before you dive into the "doing" part of my list, I want you to take a beat and feel what you're feeling.
Here are some ways you can cope with your diagnosis:
Share what you're going through with friends and family. Your support system is an important part of your journey to heal your RA. Identify the people in your life that you can lean on while you're going through this process.
Find a therapist. My therapist is awesome: she's helped me process things I didn't even realize were causing me anxiety about my diagnosis, and has also helped me find ways to communicate when I need help. I encourage everyone with an autoimmune disease to have a therapist, because these conditions can feel alienating.
Uncover your priorities. Before you dive into your treatment plan, start to think about what your priorities are. To reduce pain? To get off your medication as quick as possible? To still be able to enjoy certain foods even if they trigger your symptoms? To heal aggressively so that you can retain joint function? Thinking about these things can help you tell your doctor what you want to focus on so they can help you get there.
Keep a journal. Keep both a food journal and a journal in which you can write about your experiences and thoughts. This will help you draw connections to your symptoms and emotional triggers like stress, or food triggers like dairy or gluten. It's also a great outlet to help you process this new diagnosis.
Once you've taken some time to feel all the tough emotions that come along with your diagnosis, it's time to create your action plan and assemble your team.
Step Two: Find the Right Rheumatologist
Navigating care for your rheumatoid arthritis diagnosis can be a bit scary. But never fear! There are great experts out there who can help you heal faster, get off of your medication, and live a better life.
Start by finding a rheumatologist. Your primary care physician can help make a referral, but know that you can spend some time finding the right rheumatologist for you depending on what your priorities are.
Here's what I was looking for in my rheumatologist:
A doctor who had a plan to get me off of prescription medication. It's important to me that I'm able to get off my medication at some point. Bonus points if they had previous patients who were able to taper off their RA medication.
A doctor who was thoughtful and caring and answered all my questions. I have a lot of questions, and I wanted someone who could help me through the ups and downs and complexities of medication and lifestyle choices.
A doctor who could help me with my big-picture plan. If you can, find a practitioner who has experience with using food as medicine -- aka Functional Medicine. This is an emerging set of ideologies where doctors turn to food first -- not just drugs -- to help treat their patients. They have a more holistic approach to healing diseases like RA and reducing inflammation. If you can't, that's okay -- finding a nutritionist who focuses on this can help, also!
Know that you can also change your doctor or get second opinions. As a patient, you've got to find the right medical professionals to round out your rheumatoid arthritis medical dream team!
Step Three: Find a Holistic Nutritionist
I can't recommend my nutritionist Katie enough -- she really helped me lay the foundation of a new vegan, gluten-free diet and walked me through the elimination diet. She prepared recipes, meal plans, and set up my supplement plan based on my weekly needs.
Before I started working with Katie, I really struggled to figure out ~what~ exactly I could eat in a day, especially as I was in the early days of testing out what foods sparked inflammation in my body. I was lightheaded, deeply fatigued, and was struggling to cook nutritious meals.
Katie also specializes in autoimmune conditions (and has found healing for her own condition!) which is so helpful when I was wanting guidance in lessening the side effects of my medication.
Your nutritionist is a great ally for the day-to-day struggles of living with rheumatoid arthritis, and can offer ways to help you create a solid foundation to reduce inflammation in your body and therefore reduce pain and symptoms so you can eventually heal your RA.
Step Four: Start an AIP (Autoimmune Protocol) Elimination Diet for Rheumatoid Arthritis Pain Relief
Once you've got your team in order, it's time to start an AIP (Autoimmune Protocol) Elimination Diet. This will help you cut out all of the common foods that cause inflammation, and reduce your symptoms and pain so that you can focus on healing.
I'll do a whole other blog post about the AIP Elimination Diet, but for now I'd recommend getting a nutritionist first so they can design your meal plan on this highly restrictive diet. I started the AIP diet without my nutritionist, and it was really hard to be able to get the nutrients I needed.
The goal with an AIP elimination diet is to get your inflammation down to zero so that you can then test out the foods that trigger your symptoms and eliminate them from your diet.
Step Five: Get on a Rheumatoid Arthritis Supplement Regime
From here, it's time to get on a rheumatoid arthritis supplement routine. I take a handful of different pills and powders a day that help reduce inflammation and are focused on gut health. I work with my nutritionist to adjust those as well.
If you don't have a nutritionist and your doctor doesn't recommend you any supplements, then you can do research on your own and check with your doctor what supplements you're thinking of taking so they can weigh in and make sure your supplement routine complements your medications.
Overall, this diagnosis isn't the end of the world. It's scary and tough to tackle, but there are ways in which you can improve your quality of life and make things better.
Stay tuned for more posts on how to holistically heal!