Psoriasis is visible, PsA isn't alot of the time. I carry my pain inside and even though people can't see it, life is not easy. I must plan my days carefully. Nothing is ever set in stone. A lot of plans have to be canceled, special occasions missed. You wake up with pain, live with pain and go to sleep with pain. The problem is that people look at you and wonder, why didn't she come, she doesn't look sick. People have no idea what it takes for me to get myself together to look half decent and hide the psoriasis on my hands and body, and hide the disfigured toe. The pain, in my feet, my back, my hands, well, that, I hide with a smile…the kool aid smile…that’s the nickname some of my friends gave me a long time ago. When I go out, I spent a lot of the time wondering when can I go home so that I can put my feet up and go to sleep. That is the only time I don’t feel the pain…sleep is a beautiful thing. It hurts me to watch people who I have tried to explain my condition to not understand. Sometimes it's hard for them to want to because they just want me to be normal like I used to be and it's hard to believe, because again, the pain is carried on the inside not on the outside. The next time you see a woman with a walker or not being able to get up from a seat and you wonder what is wrong with her, remember, and just because there are no scars on the outside does not mean the pain isn't felt on the inside. So you just wake up every day and say, here we go, and do the best you can with whatever you have for that day.
I work in a hospital. Yesterday I helped a patient that has prostate cancer and liver cancer that has just returned.He has had four surgeries and endless rounds of chemo & radiation and I had to tell him that his liver cancer is nearly inoperable and that he is running out of options. I saw him listening quitely taking the info in. A thought crossed my mind: how is he able to greet me with a smile and calmly sit there as we talk about such horrible news? Like I often do, I compared my own struggles with PsA with the struggles of my patient. Why are there days when I cant deal with the pain inside that you mentioned? In comparison I am not as bad off as this patient but the pain inside is always there. I wondered about what secret he knows that he deals with his illness so easily.
While I was getting his info he had been reading a booklet we have on when cancer comes back. After talking to me, he showed me the page he was on, “preparing for the possibility of death”. He said he hadnt wanted to read that page but that maybe now he should. I looked at him again and saw his pain start to leak out through his eyes.
The moral is that everyone has that pain inside when they have to live with an illness they cant cure. There is no answer or trick to it. Some days are better than others but most days are a struggle. On the worse days I try to remind myself that at least I am still here to face that struggle. Hang in there, you are not alone.
Hello and Welcome,
You need ‘The Spoon Theory’ that nym put up on another discussion
You’re right its so hard trying to explain why you didn’t attend someones occassion, when someone says ‘smile it will never happen’ when you’ve let the barrier fall for a time. I don’t remember a time without pain, I’m sort of used to it but that doesn’t mean I wouldn’t relish a whole day without it.
We try to keep positive and I have developed a thick skin for those who don’t or won’t understand.
This disease has made me a more tolerant person, I hope and opened my eyes to so many other things
Xvanex, it is so hard being in a role when caring for people who are facing the end stages of their illness, and as you say it does make you face the fact that yes, we have PsA and it sucks, but we’re still here…very humbling