5 Things I Wish My Family Knew
When it comes to conversations with my family about my psoriatic arthritis, there is so much I wish I could tell them. Despite my fluency with the written word, when it comes to talking with loved ones, sometimes I find myself actually, at a bit of a loss for words. So I believe it is a good place to start, as with many things in life, with a list. Here you will find the top 5 things I wish my family knew. This is by no means a complete list, but I think it is a great place to start.
5 things I wish my family knew...
Don’t feel sorry for me. Your sympathy does nothing for me, but your empathy can move mountains. Sympathy and pity only serve to make me appear weak in your eyes, when I am anything but. However, offering empathy and understanding that this disease is hard to live with shows me that you truly care about me, much more than sympathy does.
- Don’t take it personally. Living with psoriatic arthritis gives new meaning to the old phrase, “It’s not you, it’s me.” It is not that I do not want to spend time with you. It is not that I want to cancel plans. Sometimes, the pain and fatigue from my psoriatic arthritis leaves me no other choice. Please try to be patient and understanding especially when I am not feeling well enough to do things that we enjoy doing together.
- The amount of energy it requires to “appear normal” would blow your mind. “But you don’t look sick” is like nails on a chalkboard to those of us with psoriatic arthritis. If I had a dime for every time I’ve heard this, I’d actually be able to pay all of my medical bills. The reason I don’t “look sick” is because I have put an extraordinary amount of energy into making it so. I put a smile on my face and exhert a concerted amount of effort to simply walk without looking straight out of the latest episode of The Walking Dead.
- Sometimes I need help, even with the little things. There are a great deal of things that I’ve been able to easily do in the past, that I struggle with today. These are simple tasks like opening bottles, standing up from the couch, and getting out of the bed in the morning. All of these take patience, and sometimes some help, for me to do. Chances are my pride keeps me from asking, but please just know how much your help is appreciated.
- Following a special diet, taking supplements, or trying herbal remedies will not cure me. There is no cure for psoriatic arthritis. It is a chronic condition that I will live with for the rest of my life. While I appreciate the sentiment and desire to be helpful, offering such suggestions is neither. Yes, some dietary changes have been shown to help combat inflammation. Some supplements and herbal remedies have been reported to help control the pain and fatigue associated with psoriatic arthritis. I appreciate your kind thoughts and words. But it has been a hard fight to accept that psoriatic arthritis is chronic. It took a great deal of time, reflection, and finally acceptance to come to terms with the chronic nature of this disease. That doesn’t mean that I don’t foster hope of a cure one day in the future. Simply that if the cure was as easy as “trying vitamin D,” or “cutting out dairy” it would have been done long ago.
What would you say?
We all have things that it would be nice if those we loved just “knew.” But life doesn’t work that way. The only way people know our thoughts and how we feel is if we jump in and start the conversation. How about you? What do you wish you could tell your loved ones?
Have you ever applied for disability?