Part 1: What does it mean to be sick?

“You don’t look sick” is a common phrase heard by those of us with “invisible” illnesses.  I think it’s often meant as a compliment, but sometimes it is an accusation.  There seems to be an expectation that if we’re “sick” there will be some visible sign or to be truly sick we must be constantly miserable.  Maybe people are lumping together being sick, having a chronic illness, or having a disability.

Maybe we expect “sick” people to all look like we do when we have the flu: feeble, pale, clammy, barely able to stand upright.  Maybe we expect there to be some other visible indicator that there is a disability, like crutches or oxygen.

As a child I became sick while our family was visiting an aunt in New Jersey.  I think I was around 10.  I remember being in my aunt’s room, in her bed, with lots of family members around me.  I know I wasn’t feeling well.  I don’t remember if I was throwing up.  I often got ear infections at that age that would cause nausea, but not show outer signs of an ear infection.  A bunch or people were in the room checking on me.  Someone told a joke and I laughed.  My mom said something to the effect of “You can’t be that sick if you’re laughing.”

That comment made an impression on me.  My mom didn’t mean it in a mean or negative way.  She may even have meant to comfort herself that if I could laugh, I wasn’t sick as I’d been with other ear infections.  What stuck with me though is the idea that being sick and being happy couldn’t or shouldn’t coexist.

I joke that we weren’t allowed to stay home sick from school unless we put the request in a week ahead of time.  There was of course the exception for running a fever and throwing up.  If I stayed home every time I didn’t feel great, I probably would have missed half the school year.  My parents understood that I wasn’t well – that something was wrong with all the coughing I did, the constant runny nose and all the ear infections.  They just didn’t know what and the specialists they took me to said it was severe allergies and asthma.  Not that either of those couldn’t be deadly, but I wasn’t going into anaphylaxis.

I’m glad though that I didn’t stay home every time I felt a bit off.  I think powering through it made me tougher and more resilient.  If I was knocked down, I was able to get right back up.

On the other hand, maybe I push a little too hard now.  Maybe I don’t know how to “listen” to my body or slow down.

There’s not a right or wrong way to deal with a chronic illness.  I’m OK with who I am with my disease.  I’m OK with pushing through.  And I’m OK with how others with chronic illnesses live life with their diseases.  We aren’t all the same.  Even those of us with the same disease have had vastly different experiences in our childhoods and handle our illnesses very differently as adults.

The problem is when we lose compassion for one another and the struggles we are all going through.  On the outside it may appear to be the same or similar struggle, but it isn’t. Our upbringing has colored how we see those chronic illnesses and how those of us with chronic illnesses live each day.

I’ve worked for the Federal Government for over 30 years now.  All agencies have a program called the Voluntary Leave Transfer Program (VLTP), where Federal employees can donate their annual leave to other Federal employees who have exhausted their sick and annual leave and qualified for this program.

Because of my various doctor appointments and chronic lung infections due to Primary Ciliary Dyskinesia (PCD), I have never accumulated much annual or sick leave.  In fact, my first day at work was on IV antibiotics.  I told my boss, but other people did not realize I was sick because I wore long sleeves to cover my arms, and the IVs and the antibiotics were packaged in little balls that I could easily put in a pocket.  Thus, I didn’t look sick but had an infection that required IV antibiotics.  Back then, since the IVs were peripheral, not PICC lines, they needed to be changed every 3-5 days.  And since we didn’t have the flexible days we do now, and any appointments meant I had to take leave, I used up nearly all of my annual leave and sick leave.

About 20 years ago I booked a week’s vacation in Costa Rica.  I think I made the reservation in the summer, with the trip scheduled for February.  The fall before the trip (September – December) I got sick with repeated lung infections.  I went on the VLTP so I wouldn’t need to take leave without pay for all my appointments and for the days I was too sick to come into the office.  I was fully recovered by the time my trip came around.  When I returned from Costa Rica a coworker told me people shouldn’t donate leave to me if I was going to use it for a trip.

I felt stunned.  Does this mean people with chronic illnesses don’t deserve vacations?  Do healthy people think staying home because one’s sick is a vacation?  While I can understand “appearances”, I think we are all a little too quick to judge others.

With a chronic illness one can be both sick and still work.  I’m pretty sure if most healthy people were in my body for a day it would be one of the worse health days of their lives.  Of course, that’s going from zero to 60 in an instant.  I’ve had 54 years to adjust to the steady decline and can handle both being sick and acting like I’m feeling great, or at least functional, at the same time.

Before we had (almost) office-wide work from home, one of my bosses offered to look into a special accommodation for me to work from home two days a week on a regular basis and more if I was sick.  This really helped.  I didn’t have to take as much leave for the nursing visits while on IV and I didn’t have the stress of driving into the office every day.

After I’d been doing this for a while, our office secretary commented to me that she wished she could have a few days off at home each week.  Yet another blatant and unkind misperception.  I wasn’t spending my two days a week going to the spa.  I was working.  And I was able to rest at the same time.  I wasn’t spending 2-3 hours on the road commuting.  She didn’t understand the effort for me to show up every day and work a full day.  And she didn’t understand that I was working from home because I had a chronic illness.  If the cost of working from home is a chronic illness, I’m pretty sure most people would pass.

We are all biased by our individual life experiences.  We think everyone will react the way we do or see things the way we do.  I think some people feel I should “show” I’m more sick, and others think I shouldn’t share being sick at all.  I hear that I’m too positive from some and too negative from others.

Part 2: My Sister’s Keeper

I’ve certainly been judgmental on my journey too. When I was younger, I was critical of how my younger sister handled her illnesses.  I have tended to be more independent, or maybe it’s that I push others away.

There was one time when we were both in our teens (I think we’d been diagnosed with PCD at this point) when my parents went away for the weekend.  My sister was nervous about their being away and ended up getting sick and my parents came home sooner than they’d planned.  I was upset with my sister.  I thought she had worked herself up into being sick and my opinion was that she could have let my parents finish their trip.  Her experience of what it was like to be sick was vastly different than mine though.

One time when she was in high school, she had pneumonia and required chest tubes to drain the fluid off her lungs. They were initially pulling the fluid out with a long syringe through her back, but decided she needed the chest tubes.  I remember thinking at the time that I could never go through that. To this day I haven’t had to.

My sister usually wanted someone to go with her to get her PICC lines.  For me though, after a few PICC lines, they got to be so routine it didn’t bother me to go on my own.  My parents always offered to go, and sometimes I took them up on the offer, but many times I didn’t.

I’ve judged my sister for how she handled PCD.  I saw it as attention seeking.  I had the same disease after all, and I didn’t think it was that bad.

I don’t see it that way anymore, and I’m sorry that I judged her based on my experiences and because what she needed was different from what I needed.  I see my sister as strong and resilient.  She had a double lung transplant over eight years ago.  One week after the transplant, when I was visiting her in the hospital and remarking on how she didn’t look like she’d just had a double lung transplant (you know, because she was smiling and joking around) she asked me if she was making it look easy.  She knew that one day roles would be reversed, and she didn’t want me to see all her pain and struggling.  She wanted me to have complete faith that I could do this too.  She was worried that if she showed me how hard it was maybe I wouldn’t feel I was up to it.

Part 3: Diverging Paths

We are all on different paths in life, even if we seem to be on similar paths because we have things in common like a chronic illness or specifically PCD.  As kids some of us are seriously ill and some of us barely have the sniffles.  Some of us have other limiting medical conditions.  Some of us will need lung transplants and some of us won’t. 

It is possible to be evaluated for a double lung transplant while training for the New York Marathon. It is possible to be on supplemental oxygen and work fulltime. It is possible to not be able to get out of bed one day and to get together with friends the next.

We are all different and we all deserve the space to be with our illnesses where we are.  Whether it’s reaching out for help, wanting to be heard, being upbeat or not communicating at all.  There’s no right or wrong way to have a chronic illness.  You can only do it your way.