Living with an “invisible illness” like psoriatic arthritis (PsA) is tough. Despite the world’s best efforts to be kinder and gentler, sometimes people still criticize and judge one another, even if their intentions are in the right place.
I realize it can be difficult as a friend, family member, caregiver, employer, or co-worker to understand and deal with an autoimmune patient in your life. I see it from your side — I really do. I was once healthy and knew someone like myself. I was judgmental, too (even if only in silence). Now that I am chronically ill, I see both sides.
Here is what I would like you to know about my life with an autoimmune disease. This is my public service announcement on PsA.
- I do not like to disappoint you. I do not like a sink full of dirty dishes either. I do not enjoy canceling our night out at the last minute because I’m in too much pain. I feel disappointed in myself regularly because of my PsA. I do not need you to rub salt into the wound.
- If I ask that you vacate the handicapped seat on public transportation, please do so without sneering or rolling your eyes. The expression on your face hurts me, but it’s nothing compared to joint and connective tissue inflammation.
- I am doing all I can to manage my condition. Sometimes, this is not enough. Autoimmune diseases are unpredictable. I am always going to have good days and bad days.
- Even though I have good days, I am in physical pain every day. I do not look sick and am perpetually cheerful, but this doesn’t always mean I’m okay. Sometimes, the only thing I am faking is being well.
- Almost daily, I learn I am no longer able to do something I used to. I wish I had danced more while I was good at it.
- I cannot predict when I will be too sick to spend time with you or too sick to work. As a person who plans out almost everything, this is frustrating for me, too. And no, it isn’t “nice” to stay home in bed all day. The fatigue is horrible and makes me feel worthless.
- What you say hurts me. What you say nonverbally with your expression hurts me. This stress usually brings on more symptoms. Many times, I wish I could touch your knee and have you feel what it is really like.
- I would rather have my “old life” back, but this is the life I have been given. There is just no way around it. Rather than trying to understand my disease, how about just sticking to acceptance? This will be good for both of us.
- Millions of Americans have my disease. Millions more will develop it. Therefore, I am your grandmother, your aunt, your mother, and your daughter. Please treat me as you would have others treat them.
Lastly, I forgive you.
Lori-Ann Holbrook lives with her husband in Dallas, Texas. She writes a blog about “a day in the life of a city girl living with psoriatic arthritis” at www.CityGirlFlare.com.