Dear Loved Ones: This Is What RA Feels Like

Rheumatoid arthritis is more than painful joints. Here’s how it can change your life and why support is so necessary.

by Lene Andersen, MSW Patient Advocate

Dear family and friends,

I have rheumatoid arthritis (RA), a chronic autoimmune disease. It’s not the wear-and-tear type of arthritis you might get with old age. This is different. It affects my whole body and chips away at my well-being. To be honest, I’m still figuring it out myself. One thing I do know is that it will affect not just my life, but also yours. I want to help you understand how it feels to be me. If you know the basics, we have a place to start a conversation.

RA Is a Full-Body Illness

Remember the last time you had the flu? You felt sick and feverish, your body was hurting, and you were so tired that the idea of making a cup of tea or taking a shower was completely overwhelming.

RA makes me feel like that. This illness happens when the immune system malfunctions. Instead of protecting me against infection, it gets confused and attacks tissues and structures in my body. Arthritis in my joints is one of the symptoms, but being an autoimmune disease means it affects my entire body. That’s what makes me feel like I have the flu all the time. Sometimes, it gets better, usually through taking medications, but it’s no guarantee. RA can flare unpredictably, all my symptoms increasing—sometimes a little, sometimes taking over my life. I have figured out a few triggers to the symptoms, but often, there’s no rhyme or reason to why I flare. Often, there is no visible sign of the war inside my body. I need your support.

It's Not Your Basic Pain

RA causes inflammation that affects all parts of my body, but the way it hits my joints is the most obvious symptom. I’m sure you’ve seen my sausage fingers or noticed the time my knee swelled to the size of a volleyball. It’s because the synovial membrane that protects my joints becomes inflamed.

And it hurts.

I thought I knew what it meant to have pain before. We have all had some lower back pain after moving to a new house, a sprained ankle, and maybe even broken a bone. None of those kinds of pain is like the pain of RA. When my joints swell, it can feel as if the bones are being pried apart. When the inflammation gets bad, it throbs to the rhythm of my heart and any weight or pressure is excruciating. Every step feels like walking barefoot on rocks, typing for a while means I can’t use my hands later, and it can make it hard to do the simplest of tasks. Like dressing myself, squeezing the shampoo bottle, or chopping vegetables.

My Energy Is in Short Supply

Yes, I know everyone is tired. But this kind of tired doesn’t get better with rest. The fatigue that comes with having RA is always there, utterly soul-crushing, and it doesn’t matter if I get two hours of sleep at night or 12. I’m still tired. My body is in a constant state of inflammation and keeps trying to get me to go lie down until I get better.

The problem is, I don’t get better.

I wake up with less energy than I had before and everything I do takes more energy than it used to. The Spoon Theory is a really good way to explain how careful I have to be about what I do and why sometimes, I have to crawl into bed before dinner. Think of measuring energy by the spoonful. I start the day with a handful of spoons that are taken away, one by one, as I do tasks like getting dressed, doing chores, or working. Most days, I have no spoons left at the end of the day.

My Calendar Is Packed With Medical Appointments

I used to only see my doctor a few times a year. Now, I have medical appointments all the time. Blood tests, X-rays, ultrasounds, appointments with my family doctor (because RA makes it easier for me to catch colds and the flu), and regular appointments with my rheumatologist, who oversees my RA treatment.

I am taking medication to suppress this condition, to protect my joints and the rest of my body against the constant inflammation. Please don’t try to persuade me to go off the meds because you think the chemicals are bad for me. It’s really hard to take this much medication every day, and sometimes, it has side effects. But it does beat down my RA most of the time and I want that—I can’t live my life without them.

Some of the medication I take may include one that suppresses my immune system, and therefore suppresses my RA. This means I have a much higher risk of infection and catching contagious illnesses. One of the best ways you can help me is by getting the flu shot and not coming over when you’re sick. Between the RA and being on these drugs, if I get sick, it might hit me harder and take a lot longer for me to get better.

Your Gentle Support Is So Welcome

Everything about my life has changed and I am having a really hard time coping. I feel like the healthy me died and now instead, I have to learn to live in this body that has betrayed me. There are so many physical changes, so much time dedicated to medical appointments, and figuring out how to fit all of that into my life. Everything feels overwhelming.

I know I’m not always coping well. To be honest, I am really sad and also really angry. I’m doing my best to learn what to do so I can still be your family member and your friend, but I’m struggling. I know it’s hard for you to understand it all and that it’s difficult watch me go through this. I need your help, but please don’t try to fix me. Right now, the thing I need the most is your love, patience, and support. I need some hugs—gentle ones, please—some laughs, and some practical help. A phone call or visit would be wonderful, maybe a freezer meal, a ride to the doctor, or help with some chores. But most of all, I need you to just listen and try to understand.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.