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Ten Things I Wish I’d Known When Diagnosed with Rheumatoid Arthritis

Rheumatoid arthritis has become such an integrated part of my life that it is hard to believe it’s been 13.5 years since I was diagnosed. Fortunately, I’ve learned a few things about RA and myself during those years.

Just diagnosed with RA? This is what I wish I had known on that fateful day.

10 things I wish I'd known when diagnosed with RA

1. Individual approaches are required

We are unique human beings. Each person living with RA is completely different. No single treatment, therapeutic approach, dietary choice, or collection of supplements will be effective for every case of RA. What works for you may not work for me and vice versa.

2. RA is about more than joints

RA is a systemic disease that affects more than joints. Just because the swelling and pain are gone doesn’t mean that you should stop therapy.

3. Treatment options are available

The first treatment you try might not work. The second treatment might work for a while but then stop making a difference. Don’t give up! It can take experimentation to find a therapy or a combination of therapies that brings your RA under control. With around 30 treatment options currently available, there are plenty of therapies to try. Please remember that you do not “fail” a therapy - it fails you.

4. Partners in healthcare

Your rheumatologist is your partner in care and should communicate with your other healthcare providers. You should feel comfortable telling your rheumatologist about any of your pains, symptoms, and concerns whether you suspect they are related to RA or not. If your doctor doesn’t listen, try to be more succinct. But if your doctor still doesn’t consider all the details and the big picture of your health, consider finding one who will.

5. Evolve your dreams

Having RA doesn’t mean that you have to give up on your dreams. They may just sparkle in different colors than before. You may not be able to do everything that you used to, but it’s not the end of the world. Adaptation and imagination are key. There’s more than one way to stay involved in an interest and people are often willing to help along the way.

6. Food and health matter

What you eat can affect inflammation in the body. Remember, however, that we are each unique. The foods I react to — sugar, grains, starchy items — may not affect you. Experiment with a food and pain/symptom diary to begin to detect patterns. Talk with your rheumatologist about an approach to eating that will optimally reduce your swelling and pain. Also, body fat can produce inflammation; so maintaining a healthy weight and eating foods that reduce inflammation would be good for both overall health and for RA.

7. Friends and family

Your friends and family will never know exactly what you feel — physically, mentally, emotionally — at any given time. Communication is key to developing an understanding of how RA affects you personally. It can be healthy to talk about your RA and to share your experiences so that you don’t feel alone and unsupported. Those that want to support you will only know how they can help if you are open, honest, and clear about your needs.

8. Changes in relationships

You may lose friends because they don’t know how to handle the changes RA may bring to your life and your relationship. It’s not about you; it’s about them. Conversely, your relationships may become stronger and you will find friends who will be there for you no matter what. You may also develop new friendships within the RA or chronic illness communities with people who truly understand.

9. Blood tests are limited

Laboratory tests do not tell the whole story. Your routine bloodwork may look beautiful and all results within normal parameters while your body is inflamed, swollen, and painful. Some people with seronegative RA do not measure high levels of sedimentation rate, C-reactive protein, or rheumatoid factor. The VECTRA test measures 12 biomarkers associated with RA and results can provide a different picture of inflammation in your body. Results might suggest that your current treatment approach is effective or perhaps needs to be reassessed.

10. Self-care is key

No matter how RA affects you, it is important to make an effort to take care of yourself. Living with RA can be challenging in many ways — physically, mentally, emotionally. Take the time to nurture your interests and maintain relationships, move your body as best you can, work with your doctors to find a treatment approach that fits your needs (reevaluate as necessary), and don’t be hesitant to call upon friends and family for help. Most importantly, be kind to yourself always.

Remember, you do not need to travel this journey alone. Our community is here for you.

What do you wish you had known when you received your RA diagnosis?

Be well, my friends,

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