When I was younger I remember hearing the phrase, “Sticks and stones may break my bones, but words can never hurt me.” Of course, as I got older, I learned words actually can hurt me. As I learn to live my new life with rheumatoid arthritis (RA), I’ve come to understand even deeper how words can cut an already wounded heart.
So I’m sharing some of the worst things people have said to me since my diagnosis, and what I wish they’d say instead.
1. “You don’t look sick!”
Why this is hurtful: People may say this with good intentions, but statements like this are so invalidating. Rheumatoid arthritis is an invisible illness, meaning people often can’t see my symptoms or the severity of the disease. Telling me I don’t look sick reinforces all the people who’ve told me it’s all in my head, and it dismisses my pain.
2. “You just need more exercise.”
Why this is hurtful: While exercise can help ease RA pain, there are times it can worsen pain or even cause damage. I work closely with a team of doctors to determine an exercise plan that works best for me. Sometimes that plan may not look how you think a good workout plan should look, but that doesn’t mean it’s wrong. Each patient is different. Each body is different.
3. “You should be gluten-free or dairy-free or vegan or paleo.” Or, “You need to lose weight.”
Why this is hurtful: While there is some research that certain foods can impact our bodies a certain way, there is not definitive data that says diet causes or cures RA. Additionally, weight gain is a side effect of many of the medications I take. No matter your intentions, advice about diet and comments about my weight are degrading and hurtful.
4. “Susie So-and-so at work had RA and cured it with [insert any supplement of your choice]. You should try that. It’s so much better than all that poison you take.”
Why this is hurtful: There is no cure for rheumatoid arthritis. None. Certain supplements and vitamins may help ease some symptoms, but there is no cure. Yes, the medications I take are scary, but, as I mentioned before, I work carefully with a team of doctors to determine the best treatment plan for me. Please trust me when I tell you I’ve done my research and am making informed health decisions.
5. “You’re no fun anymore; you’re unreliable; you’re a flake.”
Why this is hurtful: While this one might seem fairly obvious, you’d be surprised how often I’ve heard these over the years. Here’s the deal. I’m sure people think they’re being playful or joking — they might even be smiling and laughing while they say it. But those words cut to my core. I am usually thinking those negative thoughts in the back of my mind already. I’m aware of how unreliable I’ve become, and I’m already blaming myself. These comments reinforce all that negative self-talk and confirm my fear that I’m a horrible friend.
Here’s what I wish people would say instead…
6. “I’d like to see you. How does a movie night sound?”
Why this is awesome: As many times as I have to cancel plans or say no to hanging out, I still crave that social life. Having loved ones who will bring the party to me, so to speak, will always be cherished. So offer to bring tea and catch up. Plan a picnic dinner on my couch. Remind me we can still have fun and you still value time with me.
7. “I was doing some research on RA so I can better understand what you’re going through. Are there any sites or articles you’d recommend?”
Why this is awesome: I think everyone, chronically ill or not, wants to be understood. Having my loved ones try to understand and ask for my input opens the lines of communication. Hearing them say they want to know more lets me know it’s OK to share more with them.
8. “I’m headed to the grocery store, is there anything I can pick up for you?”
Why this is awesome: I abhor asking for help. I don’t want to feel like a burden, and there’s a real fear that this next favor will be the one that will strain our relationship. Even when someone says, “How can I help?” I often hesitate because I don’t want to ask for too much. Or, sometimes I’m so overwhelmed I don’t know which thing would help most. Direct offers of help are easier to accept. In this case, if they’re already going to the store, so I don’t feel like I’m asking them to go out of their way.
9. “This funny picture made me think of you.” Or, “Have you heard this joke yet?”
Why this is awesome: Someone I love said it best: “Sometimes you have to laugh to keep from crying.” I will choose laughter over misery any day, and even just a quick text message with a joke or funny picture can brighten my whole week. Also, the underlying message here is that I’m included. RA can be incredibly isolating. While my friends go on with life and jobs and families, I’m passing the time away on the couch or at a doctor’s office. Little gestures like a funny text or email let me know I’m still a part of their lives.
10. “I believe you. I have faith in you. My love for you hasn’t changed.”
Why this is awesome: The reality is that I don’t look sick. So when I tell someone I have RA and have a disability, I’m often met with disbelief. Just having someone tell me they believe me can go so far. Additionally, RA pain sometimes impacts how I can show love. There are days where hugs are just out of the question. Hearing my husband tell me he still loves me when I can’t always return that affection physically is a balm to my battered heart.
Ultimately, showing support and sensitivity is always appreciated. Every relationship and friendship is different, just like every RA patient is different. If you are unsure of what I need to hear, ask me. I’m usually more than happy to open up and have an honest conversation with you. Remember, words have the power to heal or destroy, no matter what that old nursery rhyme says.