You don’t look sick.
Wow, today must be a good day. You must be doing better if you can do that.
Aren’t you a little young to have that?
I know exactly how you feel. My legs get so stiff and sore some days.
Funny that you can do that but can’t do this.
How many times have I heard statements like this? These well-meaning people just don’t understand the battle that I and millions of others living with rheumatoid arthritis face every day.
Years ago my family wanted to do an activity together, so we all piled into the cars and went for some fun. I was already struggling with two swollen knees but didn’t want to let my kids down. I didn’t want to miss out on this memory. I knew this would set me back for a few days, but I was going to do it. We did the activity, had a blast and came home. I was exhausted and in pain.
Other family members started preparing dinner, but I had to rest and take a break. As I sat down to regroup, someone came up to me and said, “Well, I guess this is kind of convenient for you. You could play but now can’t help out? Guess this kind of comes and goes for you.” I smiled but did not answer. All the while, I was fuming inside. How could someone think this about me?
I went upstairs, sat on the edge of the bed and just cried. (Yes, men do cry, and that is OK.) My wife came to the room and sat beside me. As I told her what happened, she was livid, but I didn’t want her to create a scene. As she sat there and hugged me, I said, “I don’t know how much longer I can keep fighting. I am so tired.”
Twelve years later, I am still fighting. It’s never easy, and I haven’t forgotten that day. When you battle chronic illness, it is hard for others to understand the daily battle you face. Sometimes there is so much misinformation, misconceptions or just plain misunderstandings about the battle we face. It becomes clouded and more difficult to fight; we are battling not only the disease, but also people’s false beliefs about it. Too often these misconceptions lead to lack of empathy and can hurt the person facing that battle, as their struggle is unintentionally minimized.
If you know someone living with RA, don’t fall for these myths. Instead seek to understand the battle your loved one is facing:
- RA is not just for old people. RA can affect anyone. I have battled RA since age 15. It affects people of all ages, and for those younger patients, it can become very isolating. Often the only people they know living with RA are 2-3 times their age. One of the most terrifying statements for us is, “You think it’s bad now? Just wait until you are 50 or 60.”
- It’s not always “visible”. For some, it can cause deformity in joints, but for others, it does not. My hands and joints look OK, and unless I tell you, you wouldn’t know I have had my hip replaced three times.
- People with RA don’t look sick. If people saw me on the street, they might not know I have RA. However, with this disease looks can be deceiving. Like many chronic illnesses, it can look different for each person.
- Even a good day is a painful day. Pain is the white noise of our lives, and it is there all day, every day. Some days we might feel better, but even those days are still painful and a struggle.
- RA is not “just an excuse” to get out of things. Don’t get me wrong: I love to joke, and sometimes I try to play the “RA card” as a joke. In reality, it’s not just an excuse to get out of things. I’m not faking it, and some of the things I hated doing before are the things I miss doing the most. When I do one thing, I am often trading off the ability to do something else. But I promise that I’m not just trying to get out of something.
- There is no cure. I’m not getting better; in fact, I am getting worse. Every day my body is attacking itself, and it gets a little worse. Some days, I do have less pain, but often that is about as good as it gets.
- RA is more than just stiff joints, and it is more than “everyday pain.” I know you’re trying to be sympathetic and relate, but sometimes it minimizes the struggle we are facing.
- Being done is not the same as being suicidal. Being done just means I am tired, and I need a break from fighting this “glorious” disease. I have been “done” many times in my battle. Some days I will not be OK, and I’m just tired. Please, try to appreciate that.
- I’m not the only one struggling. The biggest misconception of this disease is that I’m alone in my battle. However, there is nothing further from the truth. Everyone in my house is fighting this disease, struggling with its effects and hurting with me. My wife and kids miss out on things, and my parents and sisters hurt when I hurt. It affects every aspect of my life and the life of those around me. This is the hardest part for me, seeing how it affects my loved ones.
If you know someone living with RA, be there for them. Listen to them and take time to care for them. Don’t look for the perfect thing to say; simply be there for them and love them – all of them! Be present in their lives, and help them find the strength to fight, even if for just one more day.
Charles Mickles, author and speaking. He has written, Mine’s Parkinson’s, What’s Yours? and What Christmas Really Is All About? You can follow his story at www.minesparkinsons.com.