Health, HIPAA, and Hospitals

I’m used to sharing *my* story and stories here, online, in an incredibly public forum. Since I’ve been off of the trail my story has been dominated not by issues with my health, but with issues associated with my fathers health. This has left me in a bit of a quandry, and has resulted in a long period of blog silence. Dealing with how much health information you want to share with your friends, your family, your colleagues, and complete strangers is a complicated enough issue by itself and one that people tend to feel strongly about and have differing boundaries for, but when its somebody else’s health information its even more complicated. I think that the amount of health information you decide to share with your friends and your family is a deeply personal issue and that each individual needs to decide those boundaries for themselves.

How much health information you share with colleagues and the internet is a much bigger issue because it has the potential to impact your current and future employment. Before disclosing any information about my health on this blog, I thought long and hard about whether or not I was ok with current or future employers learning about my health information (and any other personal information) that I share here. It made/makes me uncomfortable to think that someone might discriminate against me based on the health information that I disclose here. That, in conjunction with having had some negative experiences with stalkers in the past, made me decide to keep my blog somewhat anonymous at first. I still choose not to link this site with my full name, but at the same time I realize that everything I post online (no matter how anonymous) can be linked to me, it’s just a matter of how motivated someone is, and how much time they want to spend… there are no secrets on the internet.

There are four laws in place that are designed to prevent employer’s from discriminating against people based on their health issues and/or disabilities and to protect the privacy of health information. The four major laws that deal with employee health information are: The Americans with Disabilities Act (ADA), The Rehabilitation Act of 1973 (Rehab Act), The Family and Medical Leave Act (FMLA), and The Health Insurance Portability and Accountability Act (HIPAA). These laws are designed to allow you to keep your health information private (you throw some of that away by posting your health information all over the internet), and to prevent employers from using your health information when making decisions about hiring, firing, and promoting you. These laws are imperfect (employers with fewer that 15 employees are exempt from the ADA for example) and the waters get muddier in terms of how much information and what information to disclose if you want to take advantage of the disability accommodations associated with the ADA, or apply for leave through the FMLA. My point in mentioning these laws is to remind people that health information is important and that whether we like it or not, strangers, friends, and employers may judge us based on our health information now and in the future. If you are posting about a cold or a sprained ankle, this is unlikely to bias a future employer about your employability, but if you are chronically sick or have chronic illnesses (like asthma and ulcerative colitis) then it might be hard for a potential employer not to worry about whether or not your illness will impact your ability to perform your job, or if you’ll cost them more money than your healthier compatriates that won’t require accommodations, won’t take as many sick days, and presumably won’t need to invoke the FMLA.

I had to look into and think about all of these issues when I acquired occupational asthma. I tried to work with my employer to come up with reasonable accommodations because I *wanted* to keep working. The accommodations they came up with were minimal and not as effective as I would have hoped (they didn’t prevent me from getting sicker). The people in occupational health suggested that my best course of action would be to leave my job. I was incredibly frustrated, I was getting sick because of something someone down the hall was doing, I had no control over it, but my employer did. I looked into the FMLA trying to decide if that would help me manage my occupational exposure and my health, but ultimately I decided that the people in occupational health were right. As long as I stayed at my job there I would remain sick. In addition to the formal issues associated with health information at the work place, I also felt constant pressure from my colleagues to share more of my health information than I felt comfortable with. At one point I was accused of being a poor communicator because I was unwilling to provide as many details about my health as my peers wanted. Finally, having a boss sit you down and tell you that you need to consider yourself disabled (because of your asthma) and that you should approach your life accordingly is not even a little bit fun.

I came away from that situation resolved to prove to myself that my asthma wouldn’t prevent me from living my dreams, that I didn’t have to let my health dictate my dreams even if I did have to carefully manage my health so that I could achieve my dreams. I left the job that was killing me and my dreams to go live my dreams on the Appalachian Trail. It was the best decision that I have ever made. I managed my asthma well enough to walk 2200 miles over countless mountains and I am confident that my asthma won’t prevent me from following any of my other dreams.

Dealing with my occupational asthma made me realize how challenging it can be to manage your health and health information in a work environment. Knowing how challenging it has been to manage my own health information, I am very sensitive about how and where it is appropriate to share other people’s health information. Unless someone asks me to share their information for them, or explicitly tells me that I can share their information, then its not my place to post it online… even if its relevant to my story, to my emotional state, to my life. I will try to respect your privacy, I will try to respect the privacy of my future self, and I have dreams of a future internet where the majority of users try to do the same.

I hope and expect to have my dad home and healthy soon. As the gift giving season approaches I will try to get at least some of my gear reviews online (special review requests will be posted first), but my focus this holiday season will remain on my family and friends. On the trail my blog and the internet was the only connection I had to many of the people that I care about and love, this season I am thankful for the opportunity to connect with these people in person.