by Elizabeth Medeiros
Medically Reviewed by:
Joslyn Jelinek, LCSW
by Elizabeth Medeiros
Medically Reviewed by:
Joslyn Jelinek, LCSW
Challenges posed by psoriatic arthritis don’t mean you need to give up on your dreams. You may need to approach them with a little flexibility as they evolve.
There are so many famous sayings about how life doesn’t often go the way we plan. “Life is what happens when you’re busy making other plans,” often attributed to John Lennon, is my personal favorite. And isn’t it the truth?
Psoriatic arthritis (PsA) can be unreliable, and it’s hard to predict what tomorrow will look like — let alone next month or year. It can easily cause turmoil in our lives.
Beyond physical symptoms, coping with changes caused by PsA is emotionally taxing. It’s normal to grieve what we had. There can also be grief in realizing the future might not look as planned.
Careers, parenthood, hobbies and passions, education, and so many other things can be affected by chronic pain and fatigue. But that doesn’t mean you should give up on your dreams; it means you may need to find a way to be flexible with your goals and expectations.
It’s so hard to balance the need to listen to your body and the desire not to have your life controlled by this disease. On one hand, it’s essential to be mindful of how your body feels and how much it can handle. On the other hand, it’s not practical to let health define all our choices: we all deserve a life.
You can’t pour from an empty cup — physically or mentally.
I would never discourage anyone from following their dreams. Hope and passion are powerful motivators that get me through my worst days. But I highly encourage everyone to think realistically about their limits. Passion gets you so far and can keep you going, but it can’t solve everything.
That doesn’t mean not going for it — it can mean going for it differently.
My life has consistently reminded me that there are no guarantees. I thought I had a somewhat lucky advantage: I was diagnosed with PsA in childhood and knew I’d likely continue to deal with it as an adult. My original plan was always to be a nurse. I wanted to advocate for patients.
Unfortunately, I couldn’t handle the physical demands of the training program. I didn’t give up easily, but after researching more programs and talking with medical professionals about their training, I decided it wasn’t for me.
Instead, I decided to pursue design as art, another passion of mine. I thought this was foolproof as the design roles I was after often led to a 9-to-5 office job. It was great for a while, but my PsA got more intense over time, leading to even office work being difficult. Though some days are more difficult than others, I still have a passion that makes it feel worth it.
I’m trying to be open to new opportunities as my health needs and passions change over time.
Of course, I didn’t get to this point overnight. Sometimes, I still struggle with knowing things haven’t turned out how I thought they would. But three practices and reminders made it easier for me to adapt:
I had to stop picturing things going a certain way and embrace a go-with-the-flow attitude.
As a Type-A person, this took a lot of effort. But being hung up on what could’ve been is a lot more painful than enjoying the opportunities I have found along the way. For example, I’m not a nurse. But through my writing, I’ve helped people with chronic pain advocate for themselves. And honestly, I’m much happier with how this has turned out.
Accommodations and life hacks go a long way. Learn about your right to reasonable accommodations in the workforce and FMLA (Family and Medical Leave), exercise your right to education, and reach out to your support system. You never know who in your community is willing to lend a hand until you ask.
While there are no miracle fixes, you might find there are reasonable ways to make things work. For example, working from home and flexible hours have been a godsend for so many with chronic illnesses. For students, the switch from heavy textbooks to laptops has also been helpful.
I often refer to being in survival mode when my disease activity is high, and I’m on a vicious cycle of borrowing from tomorrow to make today work. These periods can go on for a long time and are not healthy. Unfortunately, they’re common for people with chronic pain, especially when we have no option but to keep moving forward. We all have our responsibilities.
While sometimes the only way out is through, you might take these times as a signal that it’s time for change. You might not be able to make change overnight, but it’s important not to ignore these symptoms because clearly something is unsustainable: either temporarily or long-term.
I’ve written a lot about balancing health and passions, but it’s also important to note that some things are worth the struggle. My mantras for years have been “I can do hard things.” and “This, too, is temporary.”
The greatest example I have been shown of this is parenthood. I am part of a lovely support group for women with PsA who are mothers or hope to be one day.
I do not have children yet, but I’ve found this group incredibly inspiring. All these women have talked about learning how to balance their condition with the joys and struggles of parenthood. Sometimes, this journey looks different from others, but ultimately, it’s worth the sacrifice.
Life with PsA can be unpredictable, making it hard to stay positive. It’s OK not to feel positive all the time. It’s natural to grieve when things don’t work out as you hoped or feel discouraged by your symptoms.
As a PsA veteran, balancing my life with my health can be challenging, but I’m still hopeful. I have to remind myself the flares are temporary and eventually end, even if it takes a while.
Life might sometimes pause, but it can’t stop. Having goals to work toward can be healing, especially when we embrace going with the flow and focusing on what’s working. It’s all about listening to our bodies and our hearts.
Medically reviewed on January 02, 2024
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About the author
Elizabeth Medeiros is a freelance writer and blogger at The Girl with Arthritis. She hopes to inspire those living with chronic pain by sharing her experiences with juvenile-psoriatic arthritis and offering practical tips on coping, emotional wellness, and patient advocacy. When she isn’t writing, Elizabeth enjoys crocheting, making art, traveling, and cooking.