Being open about having rheumatoid arthritis has been one of the most rewarding experiences of my life so far. As an advocate, I’ve educated people about my chronic conditions, connected with others who are dealing with the same disease or similar symptoms, and helped those around me better understand what I’m going through.
Through sharing my story, I’ve realized that people respond to hearing about someone else’s health struggles in a lot of different ways. Lately, I’ve noticed one particularly common kind of response: comparing arthritis to another serious illness or telling me that “it could be worse.”
It could be worse.
At least it’s not cancer.
It’s just arthritis.
You’re young; it can’t be that bad. Imagine what it will be like when you’re older.
For example, I recently opened up about my RA to someone at a social function. “It could be worse” were the first words out of his mouth after I said I have rheumatoid arthritis, followed by several minutes of him talking about his friend with cystic fibrosis and how she has it so much worse than I do.
I’ve even caught myself saying it when I’m trying to lighten the mood while talking about my health struggles. I don’t want people to feel sorry for me.
I know when others say things like this, it’s usually coming from a good place. Chances are they don’t know exactly what to say. They may be trying to make me better. They may be trying to make things more comfortable or seem more optimistic after learning about my diagnosis. They probably don’t know what living with arthritis is really like or just how serious and debilitating arthritis can be.
While there’s no one right way to respond to hearing about someone else’s illness, it’s important to choose your words carefully.
Having an illness is not a competition. Comparing my health issues to someone else’s can feel dismissive and unsupportive. (On the other hand, here’s how you can provide good support to those with chronic illness.) All I want is understanding and support, not pity or comparisons.
Saying ‘It Could Be Worse’ Can Cause Harm
When I was first diagnosed with rheumatoid arthritis, I struggled to make sense of it. I was torn between accepting I had a serious illness and not wanting to acknowledge just how serious it was.
I was told I had a serious autoimmune disease. I felt it ravishing my body and my mind. I read article after article and listened to story after story about people living with RA. I was terrified. At the same time, I also started to question my mental health: Could some of this be in my head, or was I really facing a scary lifelong illness?
So when others told me “it could be worse,” it made me feel like a drama queen or like I was seeking attention. I was embarrassed about how arthritis was making me weak and dependent on others. I felt guilty for needing help. Sometimes others — who were supposed to be there for me — made me feel shame when I spoke of my struggles. This made my already rocky road to acceptance even more challenging. I even denied myself treatment because I couldn’t acknowledge my illness.
Having a supportive network when you’re first diagnosed can make a big difference in how your illness affects you. Hearing “it could be worse”-type comparisons can make someone doubt how serious their condition is and even question whether or how to treat it.
Relying on Comparisons Can Prevent Learning About Arthritis
When people compare arthritis to a different disease (like the big C-word) — implying that arthritis is not as bad — it’s important to stop and understand that arthritis is serious. Assuming “it could be worse” may prevent people from considering what it’s like to live with arthritis, or to learn about all the comorbidities (co-occurring health problems) that come with it.
When people hear arthritis, they often think joint pain. They aren’t completely wrong. Joint pain, inflammation, and stiffness are major symptoms of the disease — but, please, they’re no picnic.
Joint pain can make it difficult to simply walk around or go up and down stairs, let alone do daily chores or exercise. Arthritis is a leading cause of disability, making many people —including me — no longer able to work in their regular jobs.
And anyone living with arthritis will be the first to tell you that arthritis is so much more than joint pain.
There are more than 100 kinds of arthritis, which fall into two general categories: osteoarthritis (due to wear and tear on a joint’s protective cartilage) and inflammatory or autoimmune arthritis (due to inflammation or from an overactive immune system attacking the joints).
Depending on what type of arthritis you have, many other symptoms and health problems can go hand in hand with it.
Osteoarthritis commonly occurs with obesity, diabetes, and heart disease, for starters. And with inflammatory forms of arthritis — such as rheumatoid arthritis, axial spondyloarthritis, and psoriatic arthritis — the unchecked inflammation can affect your entire body, causing damage to organs such as the lungs, heart, eyes, skin, kidneys, liver, and more. Many people with arthritis have severe fatigue and malaise. Depression, anxiety, and other mental health conditions are much more common in people with arthritis than in the general population.
There’s a reason I have more numbers for doctors and specialists than for friends in my phone now. I’ve been diagnosed with more comorbidities each year since learning I had RA six years ago. Chronic illnesses are like chips: You usually can’t have just one. And there’s no telling how all of these different conditions will come together to derail your health or quality of life.
Making Assumptions Can Reduce Empathy and Understanding
I realize this paragraph includes a comparison, but hear me out. A 70-year-old friend of mine with Parkinson’s disease has told me many times that he feels less sympathy for himself and more for me because while he was diagnosed later in life with a devastating chronic illness, I was diagnosed quite young — at age 29. That’s a long, long time to live with a chronic illness.
And though the disease hasn’t killed me or left me in a hospital bed fighting for my life (which, by the way, is not impossible with rheumatoid arthritis), it’s impacted my life in other cruel ways.
Arthritis took away my ability to pursue a career as an esthetician — a very physically demanding job. I had to go on disability. Arthritis has affected my identity, changing my personal style and some of my hobbies and passions. And my rheumatoid arthritis does not just impact me. I often struggle to parent through illness, which impacts my son’s life too. I am promised a lifetime of pain, medications, and exhaustion that would drive anybody mad.
When someone hears I have arthritis and thinks “it could be worse” or “well, you’re young and healthy; you’ll deal with it,” it may prevent them from really thinking about me as a person, and how the illness is impacting so many aspects of my life and future.
Making such comparisons and assumptions gets in the way of developing empathy and understanding, which is at the root of the support we all need (and often lack).
Learning how different diseases affect people who have them (and society as a whole) helps advance treatments and research, promotes earlier diagnosis, and lets those struggling with invisible illness feel seen.
Let’s move on from saying “it could be worse.” Though it’s not ill-intentioned, it’s far from harmless. Any pain and illness deserves validation. Every health condition deserves awareness and understanding.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
Arthritis. National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). U.S. Centers for Disease Control and Prevention. November 2, 2020. https://www.cdc.gov/chronicdisease/resources/publications/factsheets/arthritis.htm.
Arthritis Types. Arthritis. U.S. Centers for Disease Control and Prevention. February 20, 2019. https://www.cdc.gov/arthritis/basics/types.html.