What it Feels Like To Live With Psoriatic Arthritis
Psoriatic arthritis is a type of arthritis that can affect people who live with psoriasis. Those living with the condition can experience chronic pain around the joints and feel stiff, especially in the morning. To better understand psoriatic arthritis, we interviewed Marie Granucci, a Mighty contributor who lives with the condition.
Marie was diagnosed with psoriatic arthritis after a long journey to find answers to her chronic pain, which started with a broken leg. She also lives with cerebral palsy, and her experience living with multiple chronic conditions gives her a unique perspective that we’d like to share. Read on to learn more about her diagnosis journey and what it’s like to live with psoriatic arthritis.
When did you first notice that something was different?
When I was in my early 30s, about a year after I had broken by leg, my knee started to give me problems. It would swell up, get very hot and feel excruciatingly painful, especially when I would go swimming. The thought of yet another “problem” concerned me, since I had recently recovered from a broken leg. I was just starting to be able to do things again, such as finding a job, living independently and trying to date. One time the pain I was experiencing was so bad that my knee started to lock in a dressing room while I was trying on clothes. I felt like the pain would never go away and I would never have a “normal” life again.
How did you eventually receive a psoriatic arthritis diagnosis?
I went to my orthopedic doctor to see what might be the problem. I was given medication to help with the swelling and pain. It helped for a while, but then I started to notice some bruising around my knee cap. A knee brace, some physical therapy, surgery and many doctors later, I finally discovered the cause of my pain and received a diagnosis from an amazing rheumatologist: psoriatic arthritis. Luckily it was just confined to my knee. Plus, my doctor was able to determine the exact type of arthritis I was experiencing. With that specific diagnosis, I was able to start the best course of treatment for my symptoms.
What were the next steps for you to help manage the condition?
My doctor started right away to find a treatment option that would work for me, and I was finally able to find some relief. Eventually, however, I had a knee replacement to manage my psoriatic arthritis, and to this day, I’m able to better manage my psoriatic arthritis. Knee replacements aren’t for everyone, but by having honest conversations with my care team, they were able to find the best solution for me. Psoriatic arthritis can also be managed in many different ways, with medication, surgery and/or some self-care.
What is the most difficult part of living with PsA?
The hardest part of living with PsA before I found a treatment that worked for me was losing my independence. The word “independence” means a lot to me; maintaining independence can be difficult for me because I also live with cerebral palsy. When I started having problems with dressing myself and managing the pain related to my PsA, I entered a dark place of wondering if I would ever have independence again.
How does living with PsA affect your mental health? If so, how do you cope?
When I was first diagnosed, I felt lost, scared and sad, and I was very down on myself. There were days where I felt like I couldn’t see a light at the end of the tunnel. I had to find things to do to keep my mind from going to that dark place.
Before having PsA, my main coping mechanism was going to the gym — I absolutely loved staying fit. When my PsA was at its worst, going to the gym didn’t seem like an option for me, due to the pain.
But that’s where living with cerebral palsy empowered me. I was able to find exercise accommodations so I could still do what I love. I turned to social media and YouTube and found that I could take the adaptations I make in order to work out with cerebral palsy and modify them for PsA. I found that senior, chair and other seated workouts could work for me; I could push myself as much as I wanted with these types of exercises. You can check out my Facebook page for disability-friendly workout tips here.
Finding community is also important. Places like The Mighty show that there is a whole world of people that are asking the same questions you have and trying to find support like you. Connecting with others also shows that there are bright spots in a more difficult diagnosis. I have learned a lot about myself and have been able to accept the person I am — cerebral palsy, PsA and all.
Do you have any tips or tricks to make day-to-day life with PsA easier?
Keeping your mind off the pain is very important. Artwork, coloring, writing, and blogging about cerebral palsy and chronic pain helped me cope. I also found that adult coloring books were a great distraction from the pain. It channeled some creativity into my work and forced my mind away from what I was going through.
Living with cerebral palsy actually helped me find tips and tricks to make day-to-day life with PsA easier. I use a bed bar to assist with mobility for my cerebral palsy, and I found that it also helped make me feel more balanced with PsA.
Heat helped in the mornings, due to the stiffness and pain in my knee, when I was just getting up to start the day. I also found that topical pain ointment to help with the pain was very useful.
How did your friends and family react to your PsA diagnosis? What is your support system like?
PsA can be a very painful disease, and it can be easy to find yourself in an uneasy mental state. It was hard sometimes for me to find the positives in life. During this time, I started to understand how important the love of good family and friends are.
When I received my diagnosis, my family and friends were just as shocked as I was. But they were always supportive and accommodating. They never gave up on me or let me down. They helped me live the full life I wanted by still taking me out and offering extra help by pushing my wheelchair. When I wasn’t able to go out, they brought stuff over so I could still have time with everyone.
During this time, my brothers were starting to have families of their own, and that was a very bright spot for me. I had nieces and nephews that were toddlers at the time. When I was having a bad day, my brothers would bring them over to visit or FaceTime me with them. That was the easiest way to put a smile on my face. I got to play auntie to three sweet, loving kids — and the pain would fall to the wayside for a little bit.
Do you have any advice for others looking for a rheumatologist for PsA?
The advice I would give anyone looking for a rheumatologist is to make sure the doctor takes the time to get to know you. Let them know how active you were before this happened and how your symptoms impact your life. Advocating for yourself is important because, at the end of the day, you know your body best. If the symptoms you’re experiencing feel different from the normal symptoms you experience with a disability or chronic illness, let your doctor know. Bring an advocacy buddy to your appointments too; it’s always good to have someone help explain experiences and take notes.
How did living with another chronic illness impact your ability to manage your PsA?
It can be very challenging to navigate multiple health conditions at once. For me it felt like an internal battle. As much as I knew how to handle my cerebral palsy, managing PsA was more complicated. Most days the PsA “won” because the pain had a large impact on me. Combined with another physical disability, PsA’s impact on my ability to do everyday things, such as showering, dressing and getting around the house, felt magnified. Sometimes I felt a little bit helpless, but reflecting on how I navigated cerebral palsy really helped me create a great starting point for learning how to manage PsA too.
Although finding a management strategy for PsA was challenging and slowed me down, the experience also taught me just how strong I am. So now when there are other challenges I need to overcome in life, I remember how strong I was and how I can get through any next challenge.
What advice would you give to someone who was just diagnosed with PsA?
Living with chronic pain can be difficult, but I always keep this quote from A.A. Milne in the back of my mind:
“Always remember: you are braver than you believe, stronger than you seem and smarter than you think.”
These are words I live by every day of my life. They help me through the tougher moments. No words are more important to my life than these. You hope to never have to face other challenges in life, but sometimes it’s unavoidable. However, those struggles can make you come out as a stronger person in the end.