I work in the health insurance field.  The bureaucracy is enough to drive me crazy at points…even when it’s my own.

I have had a modge-podge of different paths that have shaped my self advocacy walk.  Some were volunteer experiences, others were paid positions.  If someone would have told me when I was 18 or 19 where my life would be now, I’d have told them they were full of it. But yet, here I am.

I started off my college experience majoring in Occupational Therapy.  I was in a very competitive program to study to be an Occupational Therapy Assistant. I was doing well, but in the end decided I chose that path because it meant security. In my heart of hearts, I really wanted to do journalism. I also was enjoying college & felt I wanted to stay longer than the year & half I had put in.

To that end, I changed majors and graduated with a degree in Journalism in 1999.  While on internship, I did a summer in New York & decided while the internship didn’t work out as well as I hoped,  I really did like New York.  I left thinking that I might be back after a few years….but it took.

I call Pennsylvania my happy medium. The area where I live has a mix of agriculture & suburbia with just enough to keep me occupied as much or as little as I want to be.  I’m very happy I decided to move here in 2010 with my friends.

I only wish transitioning careers here would have been as easy, but perhaps that’s how I picked up most of my skills.  Most of my jobs in NY were internet & technology based.  I spent the longest time at Medscape, a division of WebMD where I helped manage content for health professionals. I made some very wonderful friends & mentors, some of whom I keep in contact with.  It was also here where most of my colleagues saw first hand my struggle to balance a career with sometimes tumultuous health.  In fact, the second lung collapse happened there about 6 months after starting my new job in 2004. I was grabbing a piece of paper off the printer & evidently my left lung decided to punish me for it. I felt it collapse right then & there.

This is where the nightmares of disclosing my illnesses to my employers came to the forefront.  No matter how much or little I change jobs,  I’m always a bit sensitive about it.  People will often ask what’s the best way to disclose a condition & protect one’s privacy is?  The way that there is a best way is a myth.

At the time I was working at WebMD, they hadn’t gone public (until my 5th year).  We had a lot of acquisitions of other companies & were expanding, sometimes it felt right & left.  Towards the past few years all of the corporatization got the better of me at points, but still overall I have to say it was a good place to work.  In my blissful ignorance, I was assigned to a team that completely understood serious health issues.  The discussions of ADA (Americans With Disabilities Act) paperwork, reasonable accommodations, all the buzzwords of disclosure never crossed my mind. While the workloads were high & tough at points, I was never, ever made to feel guilty for taking time off to recover from some of the blows that LAM & TSC fed me.  I enjoyed decent short-term disability benefits, a choice of decent health plans,  & access to a wealth of health professional information. Which when I was having some really odd & rare issues, helped immensely.

I was afraid I’d be fired when my second collapse happened. I didn’t tell any one anything ahead of time because I had some iffy reactions at my last job when I asked for some additional time off to take care of some kidney issues (a year or so after I had my first collapse).  Yet the memory of the “kid-gloving” was still fresh in my mind & whether it was done intentionally or not, I resented it.  So, since LAM & TSC were an occasional thing — not a daily part of my life at that point, I never disclosed it.  But now, it was obvious.

However, the reaction was positive. People certainly understood my hesitancy, but they knew my work ethic. They also noticed how I did my best to button things up tightly; so there was no question if someone else had to take the ball & run with it for awhile, they could do so easily.  So they knew I was just as serious about my work as I was about my health sometimes admittedly being young, I put the work ahead.

After I moved, I knew I could not keep up the commute indefinitely.  I did an hour & half each way, three days a week & after about a year and half it was just too much.  I was so excited to start new & start with a new opportunity that had come up after a year or searching.  On paper, things looked good.

Suffice to say, things fell through. I won’t go into too much detail, but it was immensely painful professionally & personally but in the end it turned out to be a blessing in disguise because after that, I was forced to know my rights, from square one.

Three weeks into my job, I was let go because I was not allowed to take time off during the training period of 7 weeks.  The third week in I developed bronchitis. Against my better judgement I continued to try & work.  I ended up having to be hospitalized for a drug reaction in addition to the bronchitis. The company I was working for at the time said I resigned, yet I have no recollection of this. When I tried to come back to resume training, I was let go.  At the time, I was so in disbelief over what was happening I did not know my rights, nor that what was done was not only humiliating but potentially illegal.  This was the crash-course that led to filing a complaint with the EEOC, asking them to mediate.  They did not agree & I couldn’t really pursue it with just the time I was there & my state being an “at-will” employment state, but boy did that “spanking” help me learn my rights, & fast.

It also taught me about the dangers of a job being one’s main source of identity & ego. I had struggled to find this job because my whole career  was focused on “hybrid”/”jack-of-all trades” jobs. While I did many different things (writing, editing, project management) I was not solely dedicated to one of them.  Therefore, I couldn’t remain competitive in a lot of these fields.  Some even needed me to have an advanced degree to get my foot in the door.

I swallowed my pride & took a job at a local call center for 10 months after I was let-go from that other employer. It was long hours, but I was paid overtime for any extra work.  There was a lot of politics as far as scoring & bonuses, yet it was a steady job & at least I could start over somewhere. I also enjoyed most of the people I worked with.  It was hard though at times I was brow-beaten, sworn at, cranked. I often felt as if I sounded like a robot (I had several scripts I couldn’t deviate from). I had to type most of my conversations regarding over-the-counter products verbatim on old systems that sometimes failed to save them.  But I learned my worth, my bottomline livable wage, & what I could or couldn’t tolerate. All important lessons.

Which led me after that 10 months of struggle to my past/present job.  It’s a smaller company which offers healthcare plans for employer groups.  I spent 2 years listening to people complain about insurance, teaching people about their benefits, & helping resolve claims issues.  I learned a lot in the process myself.  I wasn’t timed on these calls at this job, so if someone was entirely new to the country or to the insurance process I could take time to sit with them & explain their plan & answer questions, even if it took 45 minutes or more.  Later on, I’d be promoted to an Account Manager where I was helping brokers & groups manage their plans.

I was surprised when I was promoted, but shortly after this was when I started having some issues with my breathing again.  I had enjoyed 5 years of less stress on that front with Rapamune, which I was grateful for, but I resented the latest changes because of the timing of this latest stress. It wasn’t on my radar when I applied for the internal promotion or when I received it, but as I was trying to adjust.

I mentioned occasionally only when absolutely necessary about my health issues. I had filled out ADA paperwork on day one though, so if something happened early on I’d be protected. Yet, I  was shook when I had to take a medical leave a few weeks ago because I had planned on working without issue up until August. Again, I had a blip happen at work while on the job.

I worried too when I told my boss & my HR representative about these latest developments what the outcome would be.  I knew I couldn’t hide my illnesses anymore; but it felt even more awkward than when I had to start wearing oxygen to the office (which also was hard for me).

I didn’t want to be perceived as sick, weak, or dishonest in front of my colleagues or potential clients.  Obviously I am none of these, but couldn’t help feeling that way temporarily when all the changes first occurred.  I felt cheated because it often felt that the illnesses dictated my career path rather than me having much say (while searching periodically over various times I knew there certain jobs I couldn’t work/apply for because of the physicality, travel, or other factors involved).

While I had filed disability before, it seemed FMLA (Family & Medical Leave Act) was separate or seamless & I was clueless about that too.  I had heard horror stories from some of my doctors & other people I knew about confusing forms having to be detailed out in triplicate, denied requests, & other bureaucratic headaches.  I was starting to get really nervous after being home a week (with no paperwork sent), then my boss being gone a week  (with no paperwork in sight).  I imagined having to bribe my doctors to complete the forms.

However, pleasantly none of this appeared to be true, or appears to be true yet in my case.  I received the form, of which I only had to fill out my name. My doctor & his nurse practitioner at Penn arranged for it to be expedited for me. I completed the whole process in about 2 days.  My short-term disability runs concurrently & should be coming soon. There were no separate forms needed for that.

In fact, I had more problems with getting through to my oxygen supplier’s office recently to get some information that is currently missing in order to pay my portable concentrator claims.   I will deal with this soon. Had started to the other day to at least locate the office or person to speak with about it.  But those appear to be worse headaches than my disability paperwork.

Those are the bureaucratic issues that drive me nuts, because I know how to solve them; as I’ve solved them for others. Just resent it, of course, having them thrust on me from time-to-time whether working or not, because then it feels like I’m at my job even when I’m not. Often getting something simple paid instances like these usually involves a lot of terse conservations & at least 3 calls to request faxes or emails of the information & claims of it being lost or “in process” by either the insurance company or the provider involved with me as the monkey-in-the middle go-between.

I know I should be happy because I can work my way around the system, but it’s not any less aggravating for me than if I’m working it for other people.  I’ve seen a lot of decisions & claims denied for reasons I don’t agree with but understand. Some denied for reasons I don’t agree with & will never understand.  I know it’s a business too. Yet in the past there have been instances where these decisions & trying to get inside an insurer’s head occasionally will keep me awake at night. If for no other reason than trying to problem-solve.

I guess my point here is, part of advocacy is sometimes opening yourself up to others to protect your rights & get what’s needed for the situation; even when it’s uncomfortable to do so.  At times it’s very necessary.