Please Don’t Judge This Book by Its Cover
My fellow spoonies gather closely. Let me share something with you. If I had a dollar for every time someone told me I did not look ill, I could easily buy us all a good coffee.
If I were to get money for every time I have heard, "But you look so healthy," or maybe even this one:" Why do you look so happy if you are in so much pain? Surely, if you were in so much pain, we would be able to tell." We would be eating coffee and cake already.
I am sure if we all banded together and added how often we have all been told that we do not look ill, that we look fine, and any variation of this comment. We would all have coffee and cake for a year.
Suffering in silence
So many of us choose not to live out loud with our psoriatic arthritis. Even those of us who do (like myself) also choose not to do it all the time.
Sometimes I would like to be quiet about it all and possibly pretend that it does not absorb as much of my life as it does. Being able to exist in a space that is not owned by my psoriatic arthritis is so important to me personally.
To be honest, if we were talking about how much pain we are in, it would be all we spoke about. That, however, does not mean we are not going through it.
Personally some days it is easier to just say nothing and suffer in silence, rather than answer 200 questions. Alongside those questions is bound to be some advice and someone telling me how I should be feeling about it and what I should be doing to treat it.
While I am one of the people who is usually open to talking about things, Sometimes I just want to go out and have fun without that hanging over me. So, I take my meds and carry on with life as best I can.
Choosing joy despite psoriatic arthritis
More days than not, you will find me with a relatively happy disposition. However, as I get older, I fear this will be less frequent than it used to be. This is how I get through the days with all the things I need to do, despite how I feel.
There are school, work, and home things that need doing and sorting. Some people call it "fake it till you make it."
For me, it is more of a choice about how I want to feel in my day. Psoriatic arthritis takes enough from me. As far as possible, I will not allow it to steal my joy.
This does seem to give people the impression that all is well with my health, too. They would be mistaken.
Understanding invisible pain
If those around us want to know how we are, all they have to do is ask. I would appreciate some more understanding when I was out for a fun morning and suddenly hit a flare peak at midday and crashed. This means I must go home, take medication, shower, and sleep.
There are things you can ask someone you know who has psoriatic arthritis when you think they look good but don't want to make assumptions, like: How has your psoriatic arthritis been treating you lately? Are you coping? You are looking well today. How are you feeling? Is there anything I can do for you to support you today?
Oftentimes I will preempt this when I am out with friends. In jest, I will say something like I know I look like a million bucks, but I am struggling today, so please be patient with me.
Just like a headache, toothache, or earache that you cannot necessarily see from the outside, pain is there, and it can be very debilitating. Just because we look "okay" on the outside does not mean we are. Please do not dismiss us.
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