"But you've been sick for so long."
My daughter in law came into the family after 5 of my large joints had been replaced (autoimmune arthritis attacked those first) and while I was searching for an effective treatment. You know, that pot of gold at the end of the rainbow.
The air was pretty thick with tension when I had to cancel plans to visit her and my son due to my first bout of Uveitis in both eyes. I didn't feel comfortable traveling out of state with blurry and light sensitive eyes. Staying close to my eye doctor seemed the wisest course as I began steroid drops and got use to being "super dilated" -dilation that can last for several days.
Those words of hers "but you've been sick for so long" were hard to hear. I was hurt. I was angry. I felt judged.
What was I supposed to reply? "Why, yes, I have been sick for a long time because I enjoy it!" Not. "I'm sorry" didn't ring true either. I didn't zip out and catch this illness on purpose.
This comment, made a few years ago, still rankles because my disease remains active. I found out last week that while I present clinically with PsA I am testing positive for RA again - a ccp lab was run.
I let my kids know of the overlap because it's a part of their family medical history. I wish I hadn't. My daughter-in-law told me to "feel better soon".
Wow. It's possible that she has no idea what life with a chronic illness is like. And I don't know how much energy to put into trying to educate her.
Knowing what to share with family is so hard sometimes. I fear being disappointed again.
That is such a difficult situation,
. Some people are just honestly incapable of understanding something they have not experienced. Have you considered kindly telling her that you appreciate her well wishes, but that you would be even happier if she learned more about your diseases since they will never go away? Maybe you could share some of our articles with her. This one might be a good place to start: https://psoriatic-arthritis.com/living/5-things-i-wish-my-family-knew. If nothing else, she might grow so tired of receiving the articles that she becomes more careful with her words. 😀 Thinking of you and sending lots of gentle hugs your way. - Lori (Team Member)
, such truth in your statement that people can't understand what they haven't experienced.
More than anything I would like to teach my children how to be resilient. I try to demonstrate that in my PsA struggles. But I am much more guarded now with what I share with her. Makes me so sad to think that illness can create a wedge.
I love your humorous approach - flood her with info 😀
