What I Wish My Family Knew
Last updated: November 2023
First, no one chooses to have psoriasis. Despite having had people accuse me of knowing I had psoriasis, I was not given any intel on this until it happened. Knowing you have a lifelong disease is overwhelming. Secondly, it causes mixed emotions. Finding your way through the feelings is kind of rough. My mind went through so many thoughts. There are times I still don't know what or how to feel. Third, my body reacts differently than how it has in the past, or how I anticipate it to react sometimes. For example, when it rains, I expect it to be achy and flared, yet the same thing can happen on a beautiful sunny day. Often I wish I knew.
My body doesn't always allow me to do the things I want
One thing that I have learned about living with psoriasis, is that there are many times that I wish I had a manual to help navigate the disease and my body. When I start out making plans for my week, they are based off what HAS to be done and what I would LIKE TO DO. In a perfect world, I would be able to do everything for the week that I can imagine. My standards have had to lower to accommodate the fact that my body pain level or stiffness may not allow me to what I would like.
Having my family try to understand that my inability to do what was planned does not have ANY reflection on them. My love for the activity and for the people I am with has not changed. Just because I may not be able to do the activity this time doesn't mean I won't ever do it again. There are just times when the pain is not tolerable. There are places on my body where my flaking skin has cracked and it burns like a paper cut. I try very hard not to let my psoriasis dictate what I do. When I cancel something that has been planned, this is not something I take lightly. Please don't stop asking me to do things with you.
Please don't let me chase you away
There are times when I realize I am not happy, not social, and am just quiet. First, if I am really feeling a lot of pain, I get crabby. This is not something I want to be. There are times when I am in more pain than I even realize. If you ask if I am hurting it may make me think about it and realize that I am. Please don't let my crabbiness chase you away. This is usually when I need a pick me up. Someone to remind me it's not as bad as it seems. Watch a movie with me, play game, pick a craft.
Remember my body causes me to be limited to some degree. Cleaning is not something that is easy anymore. Carrying laundry up and down is not something I can do anymore. Offer to carry it up or down for me. When you see me cleaning the kitchen offer to help out. Maybe dry the dishes or offer to put them away. I appreciate the help because it keeps me from standing so long on my feet. My mood tends to be happier when I am able to have free time the same as anyone else. I am somewhat of a stubborn person and I feel ashamed to ask for help. So know if I am asking I really do need help.
Feeling like a failure
There are many times that my own health makes me feel like I am a failure to my family. When I can't spend time with my family doing what they are doing it makes me feel like I am not a good family member. Sometimes when the pain is bad I feel like my body is failing my mind. My mind is fully working and I want to accomplish things, but it is my pain that causes me not to be able to. Weather often effects my body. Living in the mid-west is somewhat bad because the weather is always unpredictable. That means my body's reaction is also unpredictable. For that I am sorry but I can only try to relieve the pain and do my best.
What things do you wish your family knew? Do you ever feel the same as I do?
Are you recently diagnosed with psoriasis?