What are some of the challenges of living with GPP?

One challenge is the unexpected nature of the condition—not knowing what the triggers could be. I have to be really careful to avoid any kind of skin irritation and I never know with certainty which efforts are useful. I got a rash from a mosquito repellant the other day and ran to the shower as quickly as possible because I never know what will turn into something more serious. I’m careful about anything that touches my skin, but also about things like laundry products (one of my breakouts was caused by fabric softener). Sun exposure is a big factor for me, as well, so I try and limit my time outdoors.

I’m in an extended period of remission now, with no outbreaks in the past two years. But when my GPP flares up, it’s nuclear. It starts in the centre of my body and goes outward. My first outbreak approximately four years ago put me in the hospital for three nights on IV fluids and antibiotics to make sure I didn’t reach a state of sepsis. It was intense, painful and itchy; and I lost 70 per cent of my skin. I’ve had a few outbreaks since then, but I do everything I can to avoid them because they’re so life altering.

How does GPP affect your partner?

My partner has learned to look for the bodily signs. A little spot that might be caused by heat from the shower could also mean an outbreak is coming. My partner has to be strong when I’m weak. They have do things while I fall asleep and set aside their personal life to take care of me. Basically, during an outbreak, I have to focus all my energy on getting better, while my partner does everything else. We make allowances for people when they’re ill—maybe not as much as we should, but we do. That said, we don’t make the same allowances for caregivers. GPP absolutely disrupts my partner’s life.

How does GPP affect you at work?

When my first outbreak happened, I missed nearly a month of work. When I came back, my partner bought me fingerless gloves because I work with kids, and they would ask what was going on with my hands. Severe outbreaks are visible for weeks even when I’m healing, and people are grossed out by seemingly unhealthy skin. That said, I don’t mind the kids’ curiosity; having that type of dialogue can be a great empathy-building activity. We don’t have to be hush-hush and can explain what’s going on in an age-appropriate way.

How supportive has your employer been?

There was a bit of confusion at first because I didn’t have a diagnosis, and nobody expects you to miss an entire month of work because of a rash. But I’ve found the job I’m best at and I do it well. I’m at the top of my field—I’m even a keynote speaker about my profession, which makes things easier and more lenient. I’m also autistic, so my employer has given me a private office if I need somewhere to decompress. All that said, my employer helps me alleviate stress, which can also be a big GPP trigger.

What additional resources or support would you have liked access to?

It’s lonely having an illness almost no one else has. GPP affects about 20 people per million; and it impacts people in a range of ways, which means it’s almost impossible to find anyone with the same experience. There are support groups for plaque psoriasis, but my condition doesn’t have a lot in common with that. For me, outbreaks are rare—but when they happen, I’m completely flattened. I wish there was a way I could find others who’ve been through what I’ve been through.

Mental-health support is essential. Following my first outbreak, I went through the hardest time of my life: I was depressed, exhausted and anxious. Even now, living with GPP is like living with a bomb—and I don’t know what will cause it to detonate. This leads to constant vigilance, but I have to manage my stress because GPP flares can be triggered by anxiety. Right now, I credit my improved mental health to my continued remission.

What opportunities has GPP given you—for example, to speak out and help others?

I’m an accidental disabilities blogger and I’ve participated in focus groups related to GPP. I’ve been flown to Budapest with my partner to talk about my experience with GPP. In addition, I’ve been able to shine light on issues like disparities with dermatological conditions based on skin tone. My skin matches the sample images, but I often wonder about the outcomes people may have if their lesions aren’t as easy to see. There’s definitely bias in medicine—systemic issues are just as much at play for the chronically ill.

What do employers need to know about rare diseases like GPP?

A lot of the stigma around workers with disabilities is misguided. The chronically ill and people with disabilities I’ve spoken with are some of the hardest workers I’ve ever met. However, we waste a tremendous amount of energy pretending we’re not disabled, which that takes a huge toll. For me to do well with a chronic illness in the workplace, I have to work harder, be the top producer and be at the top of my field. And this is applicable to others who have disabilities, too.

People with disabilities don’t ask for more than they need from their employer. In fact, they tend to ask for less and settle for less than they need. We put in a tremendous of effort hiding our disabilities, trying to make them seem not as bad as they actually are. We feel as if we ask for something that’s in line with how bad our condition really is, the accommodation will be considered excessive.

You won’t find employee loyalty anywhere like you will among workers with disabilities. That’s because when we find a workplace that’s willing to accommodate and support us, we’ll stay, be devoted, work as hard as we can and only call in sick when we absolutely have to; we’re continously proving how strong we are.