Why Pain Isn’t Always My Priority 

Everybody can relate to pain, but there’s so much more to my journey with psoriatic arthritis and how it impacts my life.

“What hurts and where?” is often the first question of any real intent I find myself facing in the doctor’s office after the vaguely rhetorical “How have you been?”

How have I been? Do you really want me to answer that? I think to myself.

I mean, that’s exactly what I would like to talk about, but we both know the question that really matters in this 10-minute, fleeting, once-a-year relationship is the pointed question about my pain and its location.

But at this moment, my pain, albeit something I would rather do without, is not the most pressing matter to me. Let me explain.

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Reframing pain

Pain is universal. Everybody can relate to it. However, it is also highly subjective.

Perhaps it’s because everybody can understand the basic concept of pain that we humans are better at talking about it than we are about the impact of our long-term health condition. Although, I would argue that we still have much work to do on that topic, too!

In my experience, there are so many factors that contribute to my ability to cope with my pain — how I’ve slept, my stress levels, and how clear my skin is, to name but a few. Simply asking me about my pain in isolation is like judging the quality of your favorite band’s live performance based on how loud their show was.

By looking at only the most apparent symptom, we are not addressing the cause, the journey we go on with pain, or the individual’s ability to manage it. And this is why, over the years, I have stopped focusing on what hurts and more on what matters to me with my disease: how my autoimmune condition makes me feel and how it impacts those around me.

Taking a holistic view of my pain not only guides me in how to treat my disease and manage it better but also helps me as the whole person behind the disease. This allows me to better manage relationships, my work, and my condition’s impact on others. The outcome of this approach is far better than a single pill or injection could ever achieve alone.

The mental health impact of my condition can have a far more significant impact on my quality of life than the pain from it. So, why are we not talking about it?

Pain hurts, but how it makes me feel is worse

Pain hurts. It impacts our mood, sleep, careers, relationships, and mobility. But for me, as the dad of an energetic and beautiful 5-year-old, not being able to be an active and involved father hurts me far more than the pain of a psoriatic arthritis flare ever could.

That look in my son’s eyes when I have to tell him we can’t go to the zoo as planned or a smile cut short as he realizes I’m not joining him on that slide when he asks is devastating. It cuts me down at the knees, and worse, it hamstrings me mentally, consuming me with guilt for days.

Then, there’s the long shadow of doubt and insecurity my condition casts over my career and finances and the pressure I feel as the highest earner in the household to provide for my family. Not knowing what tomorrow looks like makes things impossible to plan for.

An excellent example of that is this article you are reading now. It has taken days for the stars to align and find that usable twilight between being well enough to write and having enough time as I play catch up to all the commitments I canceled during darker days.

Although pain may be the thing that stops me from being the dad I want to be, having a conversation with my medical team about only what hurts physically and not its effects feels akin to tackling a tumor with painkillers.

Pain might be your priority, but please don’t assume it’s mine.

The future of care

This ultimately brings me to why I advocate. I share my lived experiences to try and improve patient outcomes tomorrow and shine a light on what really matters to people living with these lifelong conditions.

I envisage a world where I walk into a medical professional’s office, and the first thing I am asked is, “How do you feel?” or “What is the impact of your disease?” In this vision, people are offered an invitation to talk about what matters to them at any given time on their life journey with psoriatic disease.

I want to see rooms with two chairs encouraging people to bring an advocate — a loved one or friend. I want personalized care where the impact of my disease on my son is part of my treatment discussion. Those conversations should not only be limited to medicines to target what hurts but include holistic social prescribing options that help me and my family live better with psoriatic disease. Care should address how I can improve my mental health, tackle isolation, manage better, move more, and be the dad I want to be.

I want to be a partner in my care, not a passenger to pain scales and test results.

I want to be asked, “What’s your priority?”

So, I’ll ask you, what is yours right now?