Dear Psoriatic Arthritis,
I’ve got a few things to say to you. Although I was only diagnosed with you four years ago, there were signs you’ve been with me more than half my life. Because we never talk, I think it’s time we had a heart to heart. First, I don’t like you. These are the reasons why:
I don’t like that I have to test my legs before I walk on them, to make sure they will not buckle and drop me. I hate it that they sometimes buckle, anyway, alarming me, and anyone around me. You embarrass me.
I don’t like that your fatigue can come over me anytime, without exertion. I really hate it when your fatigue keeps me in bed, instead of doing whatever I’d like to do. You frustrate me.
I don’t like that you make me feel 90 years old. Every birthday, I get more sensitive about aging. Feeling 90 does nothing for my self-esteem. You shame me.
I don’t like that, despite growing up on stage, dancing, singing and playing piano, dancing now almost always means injury. I miss dance. You bore me.
I don’t like that I am no longer as fit or flexible as I used to be. Because of you, I am no longer as active as I used to be and may never be thin, again. On top of that, you make me walk funny. It is hard to be graceful with you around. You irk me.
I don’t like that flares mean taking medication. These can make me gain weight and keep me sleepy and constipated. I’d much rather have a glass of champagne. You are a wet blanket.
I don’t like that I have to travel with a cane, because standing in long lines at the airport is too painful for me. I really hate that flying means you grace me with severe edema, making me feel ugly and deformed when I travel. You bully me.
I hate that you make me disappoint my husband, my friends, my employer and myself. I hate when people change or cancel plans on me. I really, really hate when you make me do it to them. You disappoint me.
I hate that the ordinary stressors of life usually mean you’ll flare. After my mother passed away, you took my grief and plastered it in my jaw, my spine, my shoulders, my hands, my hips, my knees, my ankles and my feet. For three months, I was out of remission. My medications were no longer working. My doctor had to change my dosing to help me. You make me wonder what next event in my life will have these same consequences. You hurt me.
I hate that you make me feel negative things about you. I am not a negative person. So, here are the things I like about you:
My husband jokes that if women do not complain, they will die. You give me plenty to complain about. If what my husband says is true, you are also keeping me alive. Thanks for that.
If I did not have you for a weakness, I might never know my strength. I feel powerful doing simple things, even if it is only taking a shower. Some days, this might be my biggest accomplishment. Other times, I weather your pains with a smile on my face. No one knows I am suffering.
You have taught me patience. Dealing with you on a daily basis reminds me to be kind to others all the time. There are many more invisible diseases in this world. The person who was just rude to me may be suffering even more than I am.
If I have to have an incurable chronic illness, I am glad it is you. I know patients with other autoimmune diseases and I would rather not have theirs, instead.
Lastly, I am grateful for you, because without you, I might never have connected with so many wonderful patient advocates. Some of the best people I know I have never met in person. I read their blogs and tweets. We understand each other like no one else can. Thank you for my friends. You are the one who introduced us.
This article was written by Lori-Ann Holbrook, a regular contributor at PsAndMe.com, a social site dedicated to helping the whole PsA community.