‘My condition has no cure. Stopping treatment due to the coronavirus is not an option.’: Pityriasis lichenoides chronica patient details impact of pandemic, ‘I cannot stay home and self-contain’

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I just came back from NYU Langone and don’t worry, I don’t have COVID – 19. Instead, I’m one of 40% of Americans who deal with chronic conditions. I’ve debated sharing this information since the topic is highly personal, but I think it’s particularly important given current circumstances.

Over a year ago I developed a rare, chronic skin condition called PLC (Pityriasis lichenoides chronica) after a trip to Jamaica. The exact cause of the condition is unknown, there is no standard treatment, no known cure, and is chronic. This means I likely have to live with it the rest of my life. On the bright side, I’m young and at my peak fitness, my symptoms are benign, it’s non-contagious, and weekly Phototherapy treatment (UV therapy) has been highly effective. However, in the room next to mine, there is a machine that treats chronic pulmonary conditions (related to the lungs) to treat diseases like COPD, which is the 3rd leading cause of death by disease in the US.

Courtesy of Alan Chen

Managing a chronic condition can be brutal, costs can be crippling, and stopping treatment due to COVID-19 is simply not an option for many, especially the elderly. My only interaction is with my nurse, and she’s just 100% focused on administering my phototherapy and taking care of her patients. She has to work every day and is cleaning the room completely between each patient but isn’t panicking like a lot of the general public. I realize my condition is not nearly as serious as some of the other chronic conditions people have, so I empathize with how difficult it may be to get care during this time for others, and I think it’s important to realize that healthcare is a privilege in the US and not a given. When I asked my nurse last week if she’s seen a decline in weekly patients, she said, ‘No, I still have a packed schedule.’

Most people I see tend to be older and more susceptible to contracting COVID-19 or any other diseases for that matter, which must be scary for them. If you know someone, especially the elderly, who is managing a severe chronic condition, please find a way to help if they need it (e.g. rides to/from places of care). My biggest fear is honestly for others, especially the elderly, who might be afraid to go get care and may avoid getting treatment to avoid the clinic/hospital environment. The media tells them to stay home and self-contained, but the reality isn’t that simple for so many Americans with chronic conditions (oftentimes multiple conditions). Cost and fear should not prevent anyone in this country from getting care, and they should feel safe to do so.

Reliable healthcare in the US is a privilege, not a given. 27.5 million Americans are uninsured and over 57 million work as freelancers/1099 contractors (ironically myself included as an independent Healthcare Consultant) who are out on their own to figure out getting insurance plans for themselves and their families. The US healthcare system is highly complex, involving Payers (insurance cos), Providers (those who provide care), Patients, and many others all with competing priorities and objectives.

Hats off to all the nurses, caretakers, and doctors who are working extended hours and in highly susceptible environments to help ensure patients are getting the care they need.

For anyone managing a chronic condition or conditions, I encourage them to continue getting treatment and to call their doctor/nurse/clinic if they have any concerns or troubles getting to the location. I would say exercise precaution in touching any surfaces and make sure to use hand sanitizer, which should be readily available, once you arrive on location and also as you leave. Perhaps consider wearing gloves.

Also, remember there are people willing to help out there, whether it’s helping patients get rides to/from the clinics or talking to someone about anxiety or feeling alone like telemedicine or virtual counselors, so there is always a way to get care.

Stay safe, wash your hands, and let’s all get through this together.”

Courtesy of Alan Chen

This story was submitted to Love What Matters by Alan Chen. Follow him on Instagram here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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