When I was growing up, bullying was a lot more direct because the Internet didn’t exist then. It pretty much had to happen in person – usually on the playground. There was a response phrase that we victims used when we got called names or someone said something bad about us. We would reply (often with tears in our eyes), “Sticks and stones may break my bones, but words will never hurt me.”
As it turns out, we were lying to ourselves because as most of us learn as we grow older, even more than sticks and stones, words can do a lot of damage. And when you have a chronic disease like rheumatoid arthritis, it’s often the people who mean the best whose careless words hurt the most.
Words that hurt the most
There is, of course, the pervasive, “You don’t look sick.” Then there is the sympathetic, but generally untrue, “My relative has that,” or “I have that in my elbow.” Even worse is the, “Have you tried [insert folk remedy here]?” These words may not necessarily hurt but they are frustrating as they can be. They force us to ignore them or to launch into an educational discussion of rheumatoid arthritis, how you may be fine one day and not be able to get out of bed the next, that it’s probably not RA in the person’s elbow and if the remedy was as easy as gin-soaked raisins, then everyone would be cured.
Sometimes even the people who really should know better absolutely say the wrong things. As an example, I was meeting with a disability lawyer and I mentioned a co-worker who was covered under the same disability plan. He had experienced a very significant health event. I commented to the lawyer that it was easy for the disability company to point to this event and definitively say the person could work before this date but couldn’t work after it. It’s not that clear cut with RA which can gradually erode a person’s ability over time. To which the disability lawyer said to me, “Yes, but your friend is going to get better and can go back to work in the future. This is the best you’re going to feel for the rest of your life. You’re only going to get worse.” I mean, really? My disability lawyer said that? And I paid him for it?
These are just the things said to your face. Then your paranoia kicks in and you wonder if your coworkers (or others) are talking behind your back about things like missing work or faking illness.
The question is how to deal with this on top of everything else that comes along with having a chronic disease?
While I think everyone develops their own ways of combating this verbal abuse, here are some things that work for me:
- Don’t take offense when none is intended. Many people really are trying to be empathetic and/or are trying to help. There’s no need to be angry or hurt about someone who thinks they’re being nice.
- Engage only to the point you have the energy. You can use up a lot of “spoons” just combating this kind of ignorance and often without really making a difference in the other person. Sometimes a simple, polite response than changing the subject is enough. Instead of launching into a 15-minute description of what RA really is, try saying, “Is that so? My, but isn’t the weather crazy this year?”
- Develop a short blurb that you can use to provide information about RA and use it appropriately. What you tell a four-year-old who asks about your cane is different than what you tell an adult.
- Be aware of any truly damaging discussions. If people’s comments are truly harmful to you in your social or business environment, you need to defuse them. In the case of your workplace, it might be good to involve your supervisor or HR department.
Like RA, there really isn’t any cure for stupid remarks. But we can build both defenses and immunity to words that hurt.