Expectations and Understanding When Living With Psoriasis
Last updated: February 2020
I am very careful about what I expect of others. Especially when it comes to my psoriasis and my psoriatic arthritis. More than anything, all we want is love and understanding, right? If only they could understand what I am going through, they would get it and I would somehow feel better about it.
So often I would hear the words pass my lips, I don’t want sympathy. I simply want someone to understand.
Honest expectations when living with psoriasis
Let’s be honest here, it’s a broad spectrum. I want them to understand the pain, the frustration, the fatigue, and maybe the emotional impact that this has on me. Even though most days I don't even understand it. I am the one that is going through it, so you would imagine I would be on top of it.
Well, I am not. That being said, I realized that I cannot expect others to understand.
The brave face of psoriasis
I used to put a brave face on. Trying not to let on how much pain I was in, how difficult I was finding things on certain days. I would snap at my partner. He would plead and ask if I could just tell him that I having a bad day. My response "Can't you just see that I am not having a good day?"
This would often leave me feeling unwanted, lonely and angry. And my partner annoyed, confused and hurt.
One day, we sat down and spoke about improving our communication. He said he didn't notice my skin and that he was sorry he didn't notice if my plaques were darker and more swollen. Truth Bomb. I realized just how unrealistic my expectations were. That I cannot expect people to know if I do not tell them. I have since been more open about it and just tell people I am having a bad day when I am, and the change is immense.
Setting expectations for help
If there is something that I cannot physically do, then I will ask for help. I will simply state that I am having a terrible day and its effect on my skin/joints. I have realized and learned that reaching out for help is not a sign of weakness.
We are so eager to cover up how we are feeling and we don’t want to make it anyone else’s burden. Then how is it that I can expect them to understand when I'm having a really bad day, surely that actually makes no sense.
I do not expect people, even those who live with me every day to understand every day how I feel and what I am going through. What I do expect them to understand is that I still want to be invited out, even though more often than not I will not be able to attend.
The right kind of psoriasis support
If I never got an invite, I would feel forgotten and left out. I accept invites with grace and I try to RSVP closer to the time. Often times I will say, I am not feeling too great at the moment, is it okay if I let you know a little closer to the time.
I want them to just recognize how hard it is for me, they don’t have to understand. Just see it and be there for me. I've learned that you do not have to understand what someone is going through in order for them to be there for you.
Does your psoriasis management change with the seasons?