I meet new people almost everyday. New people that will never have the benefit of meeting the “old me”- the “before diagnosis me.” The old me could multi-task like you wouldn’t believe. I juggled full-time teaching, parenting my 3 young kids, and running my blog part time. Perhaps not with the most grace every imagined, but it didn’t kill me either. I was strong. I was independent. I was active. I was alive.
Changes in me
Maybe that is the problem, everything that I was is so vastly different than what I am now. You see, I am pretty new to this PsA life and I’m not all that sure how each day will look for me. I don’t know if I will ever be “myself” ever again. Or if I have to grieve the person I used to be in order to accept who I am now. That’s really the kicker about chronic illness, isn’t it? There isn’t the simple process of, “Take this medicine and you will feel better soon,” like every other time I’ve been sick. The fact that there is not a clear ending to this disease is a foreign concept to me and something that I believe, in my heart, that I have yet to come to terms with. Many days I debate if I should even try and accept it. Is accepting this new life tantamount to admitting defeat? Giving up hope? Giving up the fight?
Changes for my family
Perhaps even harder than coming to terms with my new life myself, is the adjustments that my family and friends have had to make. Finding our new “normal” has been challenging. Laundry sits around a little longer. Daddy makes more meals than not. Toys aren’t always picked up at the end of the day. I often feel guilty for not being the same mom I once was, for my inability to keep up with everything, for not fitting into the perfect, “super mom” role. I feel guilty because I have to rest more often and ask for help more often.
Changes for friends
I can’t claim to necessarily be the life of the party before, but I certainly enjoyed a day of shopping with friends or getting together for a nice dinner. My friends still have these expectations of me. I don’t think they really know how much my life has actually changed since developing psoriatic arthritis. They still see the me I used to be because my pain in not usually visible. My friends are always well intentioned when they offer suggestions to “get some rest.” But, my fatigue can’t be fixed with a nap or good night’s sleep.
Finally, focus on the positive
Despite all the changes for myself and those that love me. It is very important for my own mental health to also focus on some positive changes that have taken place.
- I have been forced to slow down– I used to feel the need to constantly be doing something. I was always on to another “project.” Now, I have to pace myself, take time, and slow down. My body forces me to take the time to appreciate what is going on in the moment around me.
- More time with my children- I used to waste time and energy feeling guilty that I couldn’t run, play, and chase the kids like I used to. So now I have found other ways to play with my kids. We snuggle on the couch together longer. We read books and color together. I now have to prioritize the energy that I have and the kids always get first dibs.
- Opportunity to meet new people– Living with the disease has opened me up to a whole group of wonderful, supportive, and understanding people who live daily with this disease. People who understand the same challenges that triumphs as me. Finding a positive support system has made all the difference.
- New career opportunities– I could be upset and heartbroken that my body can’t teach in the classroom the way I have for the past 15 years. I could choose to cry every day that this disease has robbed me of the opportunity to work in the profession that I love. But I don’t. Perhaps my body doesn’t work like it once did, but my mind sure does. My mind is strong and capable. So instead of focusing on what I can’t do, I chose to develop the skills that I can do. I’ve found a new path which has led me to a wonderful group of people and the opportunity to educate and spread awareness about what life is like with PsA.
Maybe that is what it is all about after all. Maybe accepting the “new” me is much more about changing my perspective than it is compartmentalizing myself into old and new. Instead of letting psoriatic arthritis dictate everything that I can’t do, I should focus on what living with this disease allows me to do. It allows me to meet new people, slow down and enjoy life, spend more time with my kids, and take on a whole new life of challenges and opportunities.
How has your life changed since your psoriatic arthritis diagnosis? Have you focused on the positive changes or have you wasted precious time and energy being upset and angry?