Think Ebola patients are the only ones quarantined in the 21st century? People with other contagious diseases – like drug-resistant tuberculous – are kept in isolation as well. Natalie Shure describes her two years in solitary in a long essay Inconspicuous Consumption. (One warning: the introduction of this post is not safe for work and involves a web cam.)
Shure was a young, healthy Peace Corps Volunteer in Ukraine who just happened to get the really bad, really rare kind of TB. The multidrug-resistant kind. Her piece is a must read if you want to understand what it’s like to be put in quarantine. She was initially diagnosed in Kiev but it wasn’t until she got home that the doctors realized how serious her illness was.
I had XDR-TB. The bad kind.
Effective immediately, I was placed under an isolation order. I was told to stay home whenever possible — I could go outside sparingly, but any other indoor space was off-limits until I was noninfectious. A few months, at least. The police could get involved if I didn’t comply.
When Investment Rhymes with Canada
Canada has a proud history of achievement in the areas of science and technology, and the field of biomanufacturing and life sciences is no exception.
Her doctors in Chicago couldn’t help her, so she had to go the National Jewish Health Center in Denver, which was originally the National Jewish Hospital for Consumptives.
When I was admitted to the hospital, the state of Colorado dispatched a guy to my hospital room to read me my legal quarantine order.
During my stay, I started a two-year course of harsh antibiotics, including an IV drip. I had two surgeries, which flanked a blood transfusion and peskily recollapsing lung. I lost 12 pounds and half my blood, which have been replaced, and the upper lobe of my right lung, which hasn’t. I wish I could be more inspiring.
During the current Ebola crisis it’s easy to only focus on how terrible the disease is and how we must stop it from spreading. But it’s worth thinking about what it’s like to endure isolation, on top of being terrified and stigmatized. Shure explains:
Stigma makes epidemics worse — it gives people a reason not to be seen walking into a clearly labeled TB clinic to see a doctor when they should. Loneliness and despair can convince someone that health doesn’t matter, so why take these pills? And stigma shuts people up, so they’ll never organize, influence funding, or change minds about TB. Stigma means more stigma.
Shure found that social media is a cure for the intense loneliness of quarantine.
Isolation and stigma make long treatments even harder to endure and inhibit public consciousness that could lead to more meaningful progress. But we may be approaching a new historical moment: Social media makes it easier than ever for patients to find and support one another. These connections can improve patient morale and treatment outcomes and ultimately raise the profile of MDR-TB in global health policy.
Because I was never as alone as I thought: Five thousand miles away in Siberia, a woman my age named Ksenia Shchenina was also suffering. So are patients in dozens of other countries, and more and more of them are beginning to use the internet to combat the solitude that has long not only defined the disease and its treatment, but kept it from being eradicated for good.
Doctors Without Borders has a new blog specifically for people with TB launched in January, TB & Me.
[Image from flickr user David Ingram]
