Rheumatology Nurse Practice: Managing the Common Comorbidities of Psoriatic ArthritisReceiving a diagnosis of psoriatic arthritis (PsA), or any chronic illness, requires acceptance of a new reality. The struggle to accept and cope with this new reality can have a major impact on an individual’s psychological and emotional health. They are intertwined in a way that makes it difficult to know for certain whether depression is in fact a symptom or a side effect of the disease. Regardless of the answer, both patients and providers need to be aware of the role that mental health plays in the larger PsA picture.
When I was diagnosed with PsA approximately a decade ago, I was a mom to three children aged 4 years and under. I was also a thirdgrade teacher, dealing with lots of little personalities and quirks in the classroom. And yet, I was able to care for my own needs as well as the needs of others pretty well, from my students in the classroom to my tiny humans that I tucked into bed every night. I was reliable and dependable. My disease was reasonably well controlled, and what pain and stiffness I had didn’t slow me down much. Even after my diagnosis of PsA when my symptoms began to worsen, I continued to push through increasing levels of fatigue, pain, and muscle weakness with a smile on my face, optimistic about the future.
I remember the precise moment when everything changed. It was a typical morning where I found myself getting glasses of milk together for my kids’ breakfast. As I hefted the gallon of milk to pour into bottles and sippy cups, it fell from my weak and throbbing hands, splattering and splashing milk everywhere. Under the watchful eyes of my children, the weight of the physical pain combined with the psychological awareness of an uncontrollable, uncertain future showered down on me. It took every single ounce of strength I had in that moment not to join the milk on the floor in a puddle of my own tears, frustration, and anger.
Physical pain does not exist within its own boundaries. It is not an independent phenomenon. Rather, it is interconnected with the psychological reality that is typically altered in those of us with a chronic disease. They are but two of the pieces of the larger puzzle that connect our lives.
What I experienced that morning was both a psychological and emotional reaction to physical pain. It showed me how my mental health is inextricably interwoven with my physical health. When I am—no matter how temporarily—physically unable to meet the immediate needs of my children, I feel absolutely helpless and utterly useless. After reliably caring for their every need for the first several years of their lives, as my disease made every-day activities more and more challenging from a physical perspective, my psychological and emotional state started breaking down as well.
“It is easy for providers to see the joint swelling and rash, but they can’t so easily see the toll that PsA takes on our mental health and wellbeing.”
When I spilled that milk on the kitchen floor, my mind knew that the joint pain and weakness that is a part of having PsA caused the problem, but living with the daily reality of my condition felt mentally and emotionally like an overwhelming burden. In my experience, this is the crux of what many medical professionals—through no fault of their own—struggle to fully grasp. It is easy for providers to see the joint swelling and rash, but they can’t so easily see the toll that PsA takes on our mental health and wellbeing.
A patient doesn’t need to have a history of mental health issues such as depression or anxiety to find themselves battling with them after their diagnosis of PsA. Prior to life with PsA, I never had mental health problems. In fact, my husband even lovingly gave me the nickname, Rainbows and Sunshine. But now, I struggle daily with the demons of depression and anxiety. The physical pain and fatigue, the unpredictability, and the isolation that exists with my disease combines to wreak havoc on my mental health.
Talking about mental health with anyone, even a trained mental health professional, often makes for an uncomfortable conversation. I have a pretty good relationship with my current rheumatologist, but even I know that if I were brave enough to bring up the topic of PsA-related anxiety with her, she would likely tell me to make an appointment to see my PCP or find a psychologist to talk to about it. Would I do it? Probably not. Why? Because the last thing I need are more doctor appointments when I barely have the energy to get through each day. “How would you rate your level of fatigue each day?” This is always such a loaded question I am asked at every one of my rheumatology visits. Separating the fatigue that accompanies PsA from fatigue that is related to depression or anxiety is next to impossible. I never know quite what to say. “Ok?” “Fine?” Is there a difference between the two? I think so. But I’m not sure my rheumatologist feels the same way.
What can make identifying mental health issues so exceptionally difficult for rheumatology providers is that they often don’t meet patients before they got their diagnosis to see what their life used to be like. Many of us, like me, were told by other providers that the pain and fatigue we are feeling is “all in your head” or perhaps is “simply part of being a new mom.” Having heard that so many times, it’s difficult to open up and trust anyone with feelings of depression or anxiety.
I know this all sounds terribly pessimistic, but there is hope—I promise. Once providers understand that depression and anxiety can be linked to the diagnosis of a chronic disease, there are things they can do to put a patient more at ease and help them feel comfortable talking about their emotional and mental health. Here are a few things I’d suggest:
1. Ask direct mental health questions at EVERY appointment.
“Have you been depressed lately?” “Do you sometimes feel you have trouble getting through the day?” Pay particular attention to evasive answers, lack of eye contact, and attempts to change the subject.
2. Leave out articles that discuss the links between chronic conditions and mental health struggles in every patient examination room and waiting area.
Those wait times to see the doctor can get long and, contrary to popular opinion, many of us actually do read all the posted signs and literature in the room while we’re waiting. Include articles that go beyond scientific jargon and focus more on personal patient experiences (like this one!) to take some of the stigma out of mental health labels.
3. Remind patients that just because they “fail” a medication, it doesn’t make them a failure. I know this seems like it should be obvious, but you’d be surprised how many patients in the PsA community take medication failures very personally. Even though we’re told over and over that we have no control over whether a certain medication works for us or not, it can be a huge personal letdown when we start seeing our old friends—pain and stiffness—coming back around. It is a frustrating ride, especially if you find yourself in an endless cycle of hope, waiting, and letdown as you try one medication after another.
4. View and treat each patient as a whole person rather than an assortment of swollen joints and skin rashes.
There isn’t a single part of my body or my life that PsA hasn’t impacted. True to the nature of the disease, PsA can attack joints, tendons, organs… everything. Why then would our mental health be untouchable? Just because you can’t see it or touch it doesn’t mean that it isn’t part of the disease.
5. Create a peer counselor community for interested patients.
I am well aware that the rheumatology provider community is severely overtaxed. Nurses and doctors are stretched entirely too thin and their patients’ mental health is often the piece of the puzzle that falls on the floor and gets chewed on by the dog. It would make sense from a patient perspective to offer peer mental health counseling because patients are often much more open with their peers about their emotional and psychological well-being than they are with their providers.
Without having each piece in place—physical, emotional, and psychological—the life of a patient with PsA can crumble. It’s so important to step back and look at the bigger picture. Help and support your patients’ mental health. Give them the tools—all the tools—they needed to navigate life with their chronic disease. Everyone’s puzzle is going to look a little bit different, but with a little guidance and understanding, the pieces can indeed come together to paint one amazing picture. At least one without any spilled milk.
AUTHOR BIO: Leanne Donaldson writes about her experiences as a mom and parent with a chronic illness on her blog, Smiles and Sundays.
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