DO YOU EVER NOTICE THAT PEOPLE JUST ASSUME THAT YOU ARE FINE BECAUSE YOU DON’T LOOK SICK WHEN INSIDE YOU’RE SCREAMING OUT IN PAIN?

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I got to thinking about this the other day. There is not a day that goes by that my RA does not impact me. Some days my eyes are dry and bothering me. Other days, my gums are aching. Every day I fight with fatigue. Most days, I have some type of stiffness and pain. I struggle every single day to feel normal, to be normal again. I expect people to be respectful of my illness. After all, when a co-worker is not feeling well, we normally give them their space and support them. We help them out. For me, because RA is not visible, people don’t understand that I am struggling.
Pain Free: A Revolutionary Method for Stopping Chronic Pain

I have talked about communicating what you are feeling so that others understand. I am still a true believer in this but I am finding it harder and harder to do. If I told people how I was feeling every day, I would sound like a broken record. If people ask how I am doing, I try to be truthful but you can almost see their eyes roll back as they are thinking, “here we go again with the complaints.” People who do not have RA simply can’t understand how we feel. How do we explain that we feel like we were hit by a train, left in the desert without water, had our eyes sandblasted and have been awake for three days non-stop? It is amazing how many people dismiss my disease because all they hear is arthritis. I had someone tell me recently, “Well, that’s not too bad. I hear Ibuprofen helps.” How I wish that was true.
4 Essential Keys to Effective Communication in Love, Life, Work–Anywhere!: Including the “12-Day Communication Challenge!”

Speaking of limitations, one of the hardest things that I have had to learn and continue to learn is to know my limitations and to voice them. I love to walk up and down stairs for exercise. There are days when I can’t do this because my knee joints hurt. If I need to sit down or rest my eyes, I try to do this. It is also amazing to me how many people ask if my RA is gone. Once again, I wish. They don’t understand what a long-term chronic illness is and just assume that it goes away. Take a pill and watch it disappear is not going to happen with RA.

Another thing that I find happening is that I feel angry and frustrated when people don’t understand. They tell me that I look great when I don’t feel great. I want to scream at them that just because my disease happens to be invisible to them that it is still there and will always be there and that I don’t feel good. But, at the same time, I am so tired of being sick and telling people how I really feel when they ask. It is an emotional rollercoaster and I want off of this ride.
SOS Help For Emotions: Managing Anxiety, Anger, And Depression (3rd Edition, 2017)

So, here is what I am learning (and relearning):

  • When people ask how I am doing, instead of saying that life sucks J or that my RA is flaring up, I tell them what I am experiencing at that moment in time. My eyes are dry and sore or my left knee joint is hurting because of my RA. I try to isolate what is happening and explain it to them. If they ask for more information, I will describe in more detail how I am feeling. I am finding that it is easier for people to understand if you explain your exact pain or problem and not just the disease. We can go on to talk about using eye drops to help with the dry eyes, etc. I use to feel that this minimized the disease and what I was going through, but I find that it is easier for people to understand if you break it down for them. And, there are times when they ask me how I am doing and, at that moment in time, I tell them I feel great because I do.
  • Ask for help. I hate being dependent on others. I hate asking for help. This is so hard for me to do. Just yesterday, I was trying to put a file away and there were so many files that I was not able to cram it in. I was getting frustrated and angry. I was going to move files around to fit the file in but grabbing the files was painful because my finger joints were hurting. I had to ask my staff to help me and explained to them that because my finger joints were hurting, I was finding it difficult to move the files. You know what? They were happy to pitch in and help out. Silly example but for me it was that “duh” moment in time when you realize that it works. Instead of saying my RA is acting up, I was specific by telling them that it was the joint pain in my fingers that was preventing me from moving the files. People understand this. They don’t understand RA.
  • Just say “NO.” Another difficult thing for me. My husband recently called me from work and said that a friend of ours was in town and wanted to meet us for dinner. I was exhausted. I initially said, “yes” but called my husband back and explained that my fatigue caused by the RA was high and I did not feel that I had the energy to go to dinner. I explained how that fatigue was impacting me. Again, instead of saying my RA was acting up, I broke it down and explained what I was feeling at that moment in time. He understood. We rescheduled for the following evening and had a great time.

I know that we all wish for a cure. This is a terrible disease and one that I never imagined would impact me. Until a cure is found, we find ways to work through the disease and to improve our quality of life. I truly wish all of you pain free days filled with energy. Thanks for stopping by and taking the time to read this.

Living with Rheumatoid Arthritis (A Johns Hopkins Press Health Book)

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