Many people living with psoriatic arthritis (PsA) or axial spondyloarthritis (axSpA) learn to say “I’m fine” — even when they are nowhere close to fine. People often use those words to protect themselves from judgment, minimize symptoms around others, and simply push through their day. They often hold back because they don’t want to seem like they’re complaining or difficult patients. Whatever the reason, it is important to recognize that when we stay silent, we delay our own care, overlook worsening symptoms, and miss the support we truly deserve. Speaking up, even though it may not be easy, is a vital step toward better health and quality of life.
In this episode of The Psoriatic Arthritis Club, GHLF spoke with Minionette (“Mini”) Wilson, who lives with axSpA. Her story powerfully reminds us that “fine” can hide years of pain, fatigue, and frustration — and that speaking up plays an essential role in getting better.
Mini’s journey offers important lessons about recognizing when something is not okay, preparing to talk with your doctor, and embracing self-advocacy. You’ll also find a helpful resource — our new Patient Question Guide — to support more confident, productive conversations at your next appointment.
Learning to “Look Fine” While Living With Pain
Many people with PsA or axSpA face a similar reality. Our culture often rewards people for appearing well, even when their bodies are sending clear signals of pain and inflammation. Over time, we learn to hide symptoms, downplay flares, and push through extreme fatigue.
Pretending to be fine does not stop the disease. It delays the care and treatment adjustments that could help you feel better. If you don’t express and clearly articulate how you feel, how can others—including your doctor—truly understand what you’re going through and provide the support you need?
Mini understands this all too well. Her symptoms began in childhood, but she spent years being told she was “too young for this much pain” or would “grow out of it.” Like many people with chronic illness, she adapted by masking what she was experiencing so she could keep up with expectations.
“I convinced myself that I was not in pain… I spent a lot of time just trying to be normal.”
This pressure to appear “normal” can become a barrier to effective care.
When Silence Comes at a Cost
Many patients tell us they avoid speaking up because they don’t want to complain, appear dramatic, or “bother” their doctor. They often assume everyone with a chronic illness simply pushes through severe pain, overwhelming fatigue, or unpredictable flares. This mindset can cause people to normalize symptoms that actually signal disease progression.
Mini’s story illustrates the real cost of staying silent. Before she found the right care team, she navigated excruciating pain, debilitating migraines, and profound fatigue largely on her own. She often hid how bad things were, even from herself, because she felt pressure to appear strong, capable, and “fine.” Her experience shows why acknowledging symptoms and communicating openly with your doctor are so important in managing PsA or axSpA.
How PsA and axSpA Affect Daily Life
Our 2-Minute Rheum Check survey found that nearly half of people living with axSpA feel held back from daily activities, and more than 80% say their symptoms stayed the same or worsened since their last appointment.
Mini described how unpredictable her symptoms can be:
“You can be wonderful right now, and two hours from now feel like you’ve been hit by a truck.”
She shared examples that many patients will recognize:
- Difficulty standing long enough to cook
- Needing mobility aids on some days but not on others
- Struggling with stairs at home
- Avoiding events because walking or standing might be too difficult
- Not knowing how she will feel tomorrow or even in a few hours
This unpredictability makes it even more important to speak honestly with your healthcare team. They need this information to understand your daily reality and adjust your treatment plan.
How to Recognize When “Fine” Isn’t Fine
Mini offers practical insight:
“When the pain gets to the point that it’s bothersome or ongoing… that’s when I talk to my doctor.”
She also learned to pay attention when her biologic started losing effectiveness — something many people with PsA or axSpA experience. These shifts can indicate the need for a medication adjustment.
Consider speaking up if you notice:
- Increased pain or stiffness
- Escalating fatigue or poor sleep
- Reduced mobility or new limitations
- Changing flare patterns
- Your treatment seems less effective
- You feel overwhelmed physically or emotionally
If it affects your life, it matters, and your doctor needs to know.
Preparing for Appointments When You’re Not Fine
Many patients forget important details during appointments, especially when stress or adrenaline kicks in. I often experience this myself.
Mini shared a strategy that has made a huge difference for her: using her phone to track symptoms.
“If I don’t make a note, I’ll forget.”
She records things like:
- A new pain or flare
- Sleep disruptions
- Side effects
- Fatigue patterns
- Changes that appeared after starting a medication
Tracking symptoms through an app, such as
Why Your Voice Matters in the Exam Room and Beyond
Mini learned to embrace self-advocacy:
“I am my advocate. I’ve got to use this backbone that spondylitis gave me and use it to be my voice.”
Your lived experience is essential to shaping your care. It also contributes to research and helps clinicians better understand what PsA and axSpA truly feel like day-to-day.
If your doctor dismisses your concerns or relies solely on lab results without asking about daily life, you deserve to reevaluate that relationship. You are worthy of compassionate, attentive care.
A Reminder That You Deserve to Be Heard
Mini’s journey reminds us that “fine” often hides exhaustion, isolation, and real pain. Your symptoms matter. Your voice matters. And you deserve a care plan that truly reflects what you are experiencing.
With the right tools, support, and communication, you can move toward better, more informed care — and you never have to walk that journey alone.
Do you want help starting the conversation with your doctor about inflammation at your next appointment?
Check out our NEW Appointment Question Guide for axSpA and PsA Patients. It’s designed to help you feel confident going into your next appointment, with sample questions to ask, space to set your own treatment goals, and room to jot down notes. You can type onto your guide using your computer or print it out and bring it with you to your next appointment.
Listen to Mini’s Full Interview on The Psoriatic Arthritis Club
Track Your Symptoms with PatientSpot
Join CreakyJoints’ patient-centered research registry and track symptoms like fatigue and pain. Learn more and sign up here.
This article was made with support from UCB.
