When Your Psoriatic Pain Won't Allow You To Work
Twenty-nine years ago, I started to recognize the impact that psoriasis and psoriatic arthritis had on my ability to live a full and active life. It was difficult to even then to envision a future where I continued to work, given the pain I was in.
Back then, I was already having back pain so severe that I required assistance to step onto a curb or walk through a grocery store. Now, having lived with this disability for so long, I can't let go of the hope that I might return to work.
The pains of the workplace
The last day that I worked was more than a year ago. The decision to listen to the needs of my body and take time off to recover was the hardest thing I’ve ever done. My job allowed me to do work that I love. I had the freedom and flexibility to spend time with my family and friends.
It had become increasingly apparent that my body was fighting against the long walk from my car to my office. I couldn’t leave my desk to attend meetings just down the hall. In one-on-one meetings in my office, I had to adjust my position continuously to find comfort, which made those meetings unproductive. The constant movement was a distraction to me and probably to my co-workers as well.
The decision to go on disability
There are so many times that I feel that I am being unfairly judged for my decision to take a disability leave. In my mind, the world thinks that sitting at home, sleeping in, and watching Dr. Phil. Maybe I do, on occasion. Those are my worst days, the ones like I’ve had this week.
On days like those when my pain tells me that I’m staying in pajamas all day. It’s taken a lot of therapy to come to the realization that days like those are not only acceptable, but to be expected, and that I should feel good about making the choice to take care of my body.
What does daily life looks like now?
There are also the days when I have multiple appointments with health care providers. Those days, I leave home early to have blood drawn at 8:00 AM to ensure that my medication hasn’t destroyed my liver. Then I rush home to have a telehealth visit with my rheumatologist.
Afterward, I go to the radiologist to get updated X-rays of my hands and feet so we can compare the current damage to that in my last set of X-rays. Days like this are completely exhausting for me and always increase my pain. It can take several days to recover from this kind of day.
Some of my time is filled with new treatments; attempts to fix acute problems quickly or to find new hope in treating my chronic pain. Therapies I've tried include acupuncture, different styles of massage, reflexology, reiki, personal training, or traditional Chinese medicine.
The reality of disability leave
The hardest part of taking disability leave from a job is the loss of my sense of self and the overwhelming depression from feeling I'm not making a contribution to society. I’m home wondering if people think I’m being lazy or that I'm not strong enough to snap out of this pain.
I think about the challenge of just getting up to take the dogs for a walk around the block. Mostly, I wonder if this is what my life will always be. Will I ever have more? Will there be joy? Fulfillment? Engagement with people and activities that I love?
Accepting a new normal
My life is neither what it used to be or the life I thought it would be. But it’s the life I have and, deep down, I’m an optimist, despite my sometimes-crushing depression. Chronic pain can pull you down, but eventually, you have to come back up and realize that life is still worth living.
In addition to the days I mentioned before, there's the day that my daughter comes home from college for a quick surprise visit, or the day that my neighbor stops by with a book she knows I'll love, or the day that someone contacts me to say "thank you for sharing your story, you've helped me." These days don't take away the pain, but they do serve as an important reminder that even with pain, life is good.
Listen to your body
If you are thinking of taking time away from work to manage your pain from psoriatic arthritis, I urge you to take your mental health very seriously. Talk to your therapist about preventing depression. Learn to recognize the symptoms of depression so you’ll know if you’re getting into trouble.
If you find yourself fighting these feelings, say it out loud. Make sure that people who care about you know what you’re facing. Your doctors need to know to ensure that your medicine isn’t increasing your risk of depression.
The decision to take disability leave is a very difficult decision to make, but it was the right decision to manage my pain. I encourage you to listen to the signals your body is giving you. Those signals are where you’ll find your answers.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?