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Thursday, May 23, 2013

Like Oil and Water - Work and PH

By Kiara Tatum

The academic school year has finally ended at the college, and my return to work after seven years has a summer break.  It felt great to be working, using my master’s degree in social work, teaching diverse students, having discussions on contemporary social problems, and actually getting paid to work.  I didn't know if I could actually do this, but I wanted to try it—failure or success didn't matter.  I didn't let my fears, anxiety, or self-doubt stop me from pursing this new journey in my life.  

Working and having PH can be a difficult especially if you don’t have an idea as how to start, what job you can physically and mentally do, or support on the job.   For those of you thinking about returning to work and those of you who are working, I have a few helpful tips to share with you that I learned from my own experience.
  1. Know your rights as a disabled employee.  All employers have policies, and knowing what those rights are helps get through times when you do have to miss work because of your illness.  After my hospitalization at the being of the spring semester, I learned that I had the right to cancel classes, and it was based on how many classes and hours of each class that determined how many classes an adjunct instructor could cancel before it impacted your contract with the college for the semester.  And even before my return to work, I met with a disability advocate that helped me to understand my Social Security Disability Insurance when I start work.  I found that to be most beneficial to me because I didn't want to lose my Medicare insurance because I wanted to try work again.  Disability Law Handbook 2013
  2. Don’t do it alone.  Each state has an organization to assist those with disabilities to return to work or assist with maintaining employment.  Find out what your organization is and go to them for help.  They have services from job readiness workshops to job coaches.  I met with an advocate to help me navigate the different systems that were involved if I decided to return to work.  I met with her almost a year before I actually decided to look for employment.  There are people who know these policies and advocate on the behalf of the disabled.  There is so much I have to do to maintain my Medicare medical insurance as well as my Social Security Disability Insurance, but I didn't lose those necessary benefits despite going back to work.  I even received information on transportation options for work since I don’t have a car and can’t rely on my family to chauffeur me to and from work. Social Security Administration and Work Site
  3. Don’t hide your illness.  The whole company or in my case school doesn't have to know, but at least your direct supervisor and a close colleague or two should know that you are diagnosed with PH.  This will help you when you have an emergency at work, have to take a sick/personal day, or need support on the job.  I always feared that I wouldn't be able to find employment because of my oxygen tank travelling with me.  But I felt very comfortable interviewing for the job, and I obtained the job based on my knowledge, skills, and experience.  I couldn't hide my illness, but I didn't feel the need to hide it.  Slowly I shared my illness with a few colleagues once I felt comfortable, and some colleagues were curious and did ask.  I shared the PH diagnosis with my students on day one. I wanted them to be comfortable in the class and not staring at me during a lesson.  It especially helps when I’m having a not so good day or have to cancel or miss class.  
  4. Give yourself a break.  Whether it’s a summer break, a week’s vacation, or a personal day, take that time.  I may not have a full-time job, but teaching is full-time work.  I have to create class lessons with attention grabbing activities, create and grade assignments, exams, and projects and be supportive to the students.  It’s a lot of work, so the summer break will be a great way to rejuvenate myself and spend leisure time with my family and friends.  You need to have “you time” every once in a while.  
  5. Do it your way.  Sometimes how others do the job may not be the way that you can do the job, so do what works best for you.  Because I have a chance to be creative when teaching, I don’t lecture the entire time.  I have break-out sessions for students to participate in small group discussions.  This allows me a chance to breathe and relax if I need it.  Also a chance to blow my nose and drink some water—I use oxygen supplement, so my nasal passages aren't the best and I’m always dry and thirsty.  Sometimes employers are able to assist you with the right equipment needed for you to do your job efficiently for you.  Just ask your supervisor, which is also a reason you don’t want to hide your PH diagnosis.  This gives you opportunity to be creative and persevere despite having PH.  
  6. BYOL – Bring Your Own Lunch.  I did notice that I was retaining fluid more during my work days because I was eating at the college rather than preparing food at home.  I tended to eat more unhealthy foods such as bacon, egg, and cheese breakfast sandwich and for lunch turkey sandwich with mayo, lettuce and tomato and a side bag of chips.  To a healthy person this would be okay, but for someone on a low sodium diet bacon, cheese, and turkey cold cuts are on the list of foods not to eat.  So by preparing healthier meals at home and bringing them with me, I was able to control my fluid retention easier.  It’s not fun working and being short of breath and lightheaded because you’re eating the wrong foods.  
  7. Prepare ahead of time.  With PH, you can wake up have a bad PH day.  So by preparing the night before or preparing Plan B and even Plan C or D; you can still work despite not feeling so good.  Lay out your clothes out the night before, utilize a planner for your schedule for the day in advance, and give yourself at least two hours in the morning before you have to leave for work.  You would have plenty of time to shower and dress for work, to eat a healthy breakfast, to prepare a healthy lunch and a couple of healthy snacks, and to relax and not rush in the morning before having to leave for work.  I like to watch the news in the morning before I leave for work, so I leave myself about three hours before work.  And when I get to the college I have an additional two hours to review my lesson plan and make copies.  If I’m having a not so good PH day, I can change my teaching style for the day.  I may have more break-out sessions as opposed to me lecturing for class.  I can also incorporate an activity to go along with the lesson, so I have a lot less work to do.  I also may sit rather than stand during lecture if I'm not feeling so well.  But I allow myself to have options.  Maybe at your job, you can do a day of paperwork from home or something less strenuous on the job that wouldn't require you to lose a day of work if you’re having a bad PH day.  
  8. Don’t be so hard on yourself.  I know sometimes you want to push through and be like every employee or even go beyond what’s expected of every employee, but your body won’t always allow you to do it.  And that’s okay.  I know that if I can’t come to the school because I’m in the hospital, there’s nothing I can do.  I also know that it’s okay that I can’t come to the school on a different day from what’s scheduled with the bus company, but I won’t let it keep me from supporting my students any way I can.  If I can’t grade an assignment because I needed to take care of me; then I have to just do that.  I think this was the hardest lesson for me to learn through my work experience, but I’m always ready to relearn this lesson as new challenges comes my way, and I have to let go of my issues because it is my issue.  Everyone else was okay with me having to say no, but I just wasn't okay.  I have students who said I was an inspiration to them; I had students that wanted to know what other classes I would be teaching, so they could register for those classes.  I even had students tell me that I was their favorite teacher this semester.  So sometimes by being different, being more creative, and being honest have a way of benefiting others just not yourself.  
This academic year has been exhausting and stressful but fantastic and exciting.  I can't wait to do it all over again fall semester.  I met so many new people with different personalities, and I had so many different conversations on various topics, and I just socialized with regular people.  Going back to work a rewarding experience for me because I felt like I was productive.  I haven’t felt so good in a long time.  And it is possible to work and have PH!


  1. I believe that knowing our rights and fighting for them are paramount. Employers will abuse the system, and potential employers will do their best to ignore our rights. Great post, very informative!

  2. Kiara, this is such a great post! I have been considering going back to work, but very worried about what to even do, how to go about doing it, but most of all, afraid to lose my benefits and insurance. I'm so glad I read this! I know my first step is to actually go to my local disability office and ask for help on how to return to work. You're inspiring! I'm so glad you've been able to teach, and I hope you can continue to do so for a long time! :)

  3. I agree that we need to know our rights. My first symptom was fainting spells. I didn't realize that I was fainting, I thought I was just falling. That set me up for a 2 year journey of trying to determine what was wrong with me, because I had injured myself seriously with the falls. My boss at the time, I was a middle school teacher, was very rude and told me that I needed to "quit falling on the floor." We had tile floors, so believe me, it wasn't an "on-purpose". She started writing me up for everything. I didn't know I could stand up for myself and that I had legal rights. I wish I knew what I know now.

  4. Great blog and thanks for sharing :-)