The Back Story
When I was first diagnosed with Pulmonary Hypertension I was teaching part-time in a public school. I was met with a lot of sympathy, and promises of support from the school community. Within months, however, my teaching assignment for the following year was changed to a situation where my hours were cut, my commute extended, and a student was placed on my case load who required both physical restraints for violence and chasing because he tended to bolt. By the time I was diagnosed I wasn’t even climbing a set of stairs well, so this was of course out of the question. When I tried to have my assignment adjusted so that I was actually teaching and not chasing, I was shown the door… or I quit… or I was kind of fired… whatever you call it, I was out of a job and the correlation between my diagnosis and the change in job assignment was just too convenient to ignore.
Could I have sued? Yes, probably. But I was immersed in this totally terrifying world of being a newly diagnosed Pulmonary Hypertension patient. Like so many others, I didn’t know if I was going to live more than a few years. I simply did not have the energy or internal strength to take on another fight.
Turning point
I moved on from that job and began teaching online college classes, something I still do today. A little over a year ago I also started my own company teaching sign language to kids, caregivers, and educators.
Both jobs are independent contractor based. I have to consistently earn the right to do the work based on job performance. There is no guarantee of work, and no net to catch me if it goes badly. But it is work, and work I enjoy.
Because of my experience with the public schools, I have guarded the secret of my Pulmonary Hypertension almost fiercely from anyone I have contact with on a professional level. However, in my private life I am involved literally daily in advocacy and awareness raising, to the point where my activities have become public knowledge and widely chronicled online in my blog, Facebook, newspapers, radio interviews, and through work with PHA. In short, if you Google my name, it’s connected with PH.
This has presented a huge professional dilemma. I have worried constantly that word would get out and I would again find myself without employment because someone jumped to some conclusion about what PH means in my life, as far as ability to meet professional expectations.
Two semesters ago, this worry started to materialize. A college student (whose social boundaries I can’t help but question) did indeed do a Google search on me. Then he wrote me about what he found in regards to PH. It’s safe to say he did not understand what he was reading, but suffice to say, I was shaken.
I talked to a lot of my friends in Generation Hope about these concerns – should I just come forward and tell my employers? Their advice was good. In short, it was better to come forward and be in charge of what information got out, and how it got out, than to be blindsided by information someone found online and misconstrued.
Still, I dragged my feet for a while. I was comfortable just doing my job and being trusted as a professional based on the merit of my work. I did not relish the idea of having these good relationships tainted by something like PH, and had little reason to trust things would go well, since they had gone so badly in the past.
But finally, I got sick of it all. I got sick of worrying and hiding and screening friend requests on Facebook from people I actually wanted to be friends with, but also had professional relationships with. PH is such a big part of my life; I didn’t want to hide it anymore.
I started with the sign language company I do some independent work for. I called my national director, took a deep breath, and told her the story. She’s a wonderful lady, and her response was warm and supportive. Since that call, I’ve been hired to do even more work for them, and a pretty big project at that, so I feel it is safe to say things are going to turn out okay there.
The college was harder. It’s a more high-pressure job, it’s most of my income, and if I lose it, my family and I are going to be in a very difficult financial situation. Finally though, I just had enough of the hiding and tiptoeing around, not to mention I had my parents (who also work for the college) under gag order not to talk about my PH, and that was difficult for them as they couldn’t do any awareness work of their own with most of their community because of it.
I sat down and wrote a long letter to my supervisors at the college. I told them my story, and why I had hid it for so long. I emphasized that I remain, as always dedicated to my students. The response again has been supportive, as has follow-up communication.
Today
I’m slowly relaxing and getting comfortable with the word being out there, trusting that when the hiring season next comes around, my evaluations and work ethic will be what they look to once again.
Conventional wisdom says you should keep your professional and personal life separate, and to a point, I agree. Certainly I’ve seen the dark side to why that is. However, in the digital age this is becoming more and more difficult. There is something to be said for being in control of the situation and managing how and what gets out about your medical condition.
There’s not much you can do about how PH is going to affect your life sometimes. But there’s a lot you can do about how you react to and handle it, and how you use those times to educate others. The professional arena is just one more place to make those considerations…and sometimes a leap of faith.
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