It’s Real, and It Hurts: 12 Misconceptions About Porphyria

All types of porphyria share a hallmark symptom: horrific pain. For many of us, our illness is largely invisible. For some of us, it becomes a nearly insurmountable obstacle that dictates our lives.

While I would never wish porphyria on another human, I frequently find myself wanting my loved ones to magically understand how it feels. I’ve told my partner hundreds of times how I wish we could have a “Freaky Friday” moment, so he could ever so briefly live in my body. But even a 10- or 20-second glimpse wouldn’t come close to painting an adequate picture of my life with acute intermittent porphyria (AIP). He’d have to take into account trigger avoidance, years of medical trauma, and the incomparable drain of mental and emotional energy it takes to simply show up in the world.

There’s a sense of comfort in the common humanity of a cold virus or a stubbed toe. It’s an expected part of life, and the pain is easier to bear. But when it comes to my rare disease, I often feel like no one truly understands, not even my medical team and researchers. Caregivers come close, but with their different perspective, it’s not quite the same. (No offense to the caregiving superstars out there. Please hear me: We are so grateful.)

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Living with porphyria is not easy. But the most difficult part can be managing my inner turmoil when the people in my life who should understand don’t even try. I stare down loneliness every day. But as much as it seems like I’m the only one navigating these strange waters, there are people in my life who try to understand. And then there are those who truly do: my friends around the country with porphyria.

This week, people all over the U.S. who live or love someone with porphyria are dressing in purple and raising disease awareness. For this Porphyria Awareness Week, I asked people affected by this disease to share common misunderstandings and assumptions their families and friends have had. The following are a dozen misconceptions about porphyria.

1. Pain is visible. “When I get too much sun sometimes, there’s no visible rash or crusting, but there’s pain. They don’t understand what’s going on, no matter how much I explain it.” — Darlene, erythropoietic protoporphyria (EPP)

2. It’s just a heat rash. “They say: ‘Oh your son has prickly heat? I get that all the time!’” — Michelle, EPP caregiver

3. It’s just a sunburn. “They say: ‘Oh, I get sunburned too!’ I wish that was all it was.” — Kimberly, EPP

4. Diet and exercise will cure us. “I get lectures on what to eat and advice to slow down because perhaps I’m the problem.” — Mayra, AIP

5. Treatments will cure us. “They think that someday I am going to recover and this will be behind me. Like, it will be over eventually and things will go back to normal.” — Audra, AIP

6. We are exaggerating the pain. “They don’t understand how bad it can be, and if I’m honest about my pain, all they say is that I complain too much.” — Martina, AIP

7. We’re out of shape. “When I can only walk on the treadmill for five minutes before my legs begin to hurt, or can’t do much at one time because of weakness, they think it’s because I don’t get enough exercise.” — Jennifer, AIP

8. We’re making it up. “When I try to explain porphyria to them, they think I’m exaggerating. Rather than believing porphyria is a real condition, my family and I come across as oddballs.” — Pam, AIP advocate

9. We’re unreliable. “I cannot really plan anything. I do, and then I may have to cancel. They don’t get that it’s not under my control.” — Fiona, AIP

10. We’re sick all the time. “The intermittent part of porphyria is hard for them to understand. That is why they’ve thought I’m faking the bad part.” — Desiree, AIP

11. It’s easy to manage. “It gets minimized and reduced because no one could possibly understand the chronic symptoms unless you live with them.” — Elizabeth, AIP

12. It’s only physical. “They think it only affects my body and not my mental health.” — Jacqueline, AIP

Porphyrias are complex conditions. Until we can swap bodies with others, we simply don’t have the energy to spare for people who don’t want to understand.

If you’re affected by porphyria and looking for a sense of belonging, I hope this Porphyria Awareness Week brings you a supportive community of fellow patients, caregivers, and advocates who get it. Remember, as lonely as it can be to live with a rare disease, you are never truly alone.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.