Today I finally talked with my company’s HR department about the Family Medical Leave Act (FMLA) and my various health problems. It was much harder than I ever realized it would be. I should have had this conversation some time ago, but I suppose I didn’t realize just how much I was dreading it.
My medical life is an open book. It wasn’t so much that I minded sharing what’s happening to me. Perhaps it was a psychological thing more than anything else – I had to formalize how Hermansky-Pudlak Syndrome is impacting my work life. I had to “petition” for consideration related to this disorder – and I was very surprised at how that impacted me. I really didn’t expect to have any sort of a reaction to it.
I’m not particularly close to anyone in HR so it was like talking to a stranger about my issues. I explained the clinical trial at NIH. I had to explain why it is I’m traveling to Bethesda every four months for this drug trial and not seeking out something closer to home. The turn the conversation took I had to be rather blunt to make the point. This isn’t like volunteering for one of those clinical trials you hear about on the radio where they pay you to be a test subject. The type of HPS I have is causing pulmonary fibrosis in my lungs and that is ultimately fatal. There is no FDA approved treatment for this. This is my only real choice. At the same time I tried to be positive and upbeat. I really am pretty positive about the long term, much more so than I used to be. But as I heard myself try to explain how exciting the research is and how things might not turn out be so dire – I sounded to myself like some desperate patient grasping at straws for hope. I’m not, but I sounded like it.
How do you explain to someone hearing about HPS for the first time this sort of double world many of us live in – completely prepared for and aware of the worst case scenario but living life in terms of the best case scenario?
I had to explain my concern. It isn’t so much missing work for the drug trial – it’s all the little stuff that comes up in between. Things like running back and forth to pee in cups or ostomy leaks or such. All of them are small problems really. They certainly aren’t preventing me from working, but since I can’t drive, it does take longer to manage them. A single doctor appointment can burn the better part of a work day. I know I’ve got many more doctors appointments ahead of me this year – never mind catching a cold or flu or other such bug.
Maybe in the end I won’t need the leave, but as I’ve already missed five days this year, I thought I ought to be pro-active about protecting myself.
My medical life is an open book. It wasn’t so much that I minded sharing what’s happening to me. Perhaps it was a psychological thing more than anything else – I had to formalize how Hermansky-Pudlak Syndrome is impacting my work life. I had to “petition” for consideration related to this disorder – and I was very surprised at how that impacted me. I really didn’t expect to have any sort of a reaction to it.
I’m not particularly close to anyone in HR so it was like talking to a stranger about my issues. I explained the clinical trial at NIH. I had to explain why it is I’m traveling to Bethesda every four months for this drug trial and not seeking out something closer to home. The turn the conversation took I had to be rather blunt to make the point. This isn’t like volunteering for one of those clinical trials you hear about on the radio where they pay you to be a test subject. The type of HPS I have is causing pulmonary fibrosis in my lungs and that is ultimately fatal. There is no FDA approved treatment for this. This is my only real choice. At the same time I tried to be positive and upbeat. I really am pretty positive about the long term, much more so than I used to be. But as I heard myself try to explain how exciting the research is and how things might not turn out be so dire – I sounded to myself like some desperate patient grasping at straws for hope. I’m not, but I sounded like it.
How do you explain to someone hearing about HPS for the first time this sort of double world many of us live in – completely prepared for and aware of the worst case scenario but living life in terms of the best case scenario?
I had to explain my concern. It isn’t so much missing work for the drug trial – it’s all the little stuff that comes up in between. Things like running back and forth to pee in cups or ostomy leaks or such. All of them are small problems really. They certainly aren’t preventing me from working, but since I can’t drive, it does take longer to manage them. A single doctor appointment can burn the better part of a work day. I know I’ve got many more doctors appointments ahead of me this year – never mind catching a cold or flu or other such bug.
Maybe in the end I won’t need the leave, but as I’ve already missed five days this year, I thought I ought to be pro-active about protecting myself.
Comments