No matter where you are on your journey, pulmonary hypertension (PH) takes up a lot of time. Between doctors’ visits, the tests they request, calling insurance companies, managing medications, lugging around an oxygen tank - it can be so challenging when you’re just struggling to breathe. So how does a full-time disease work with… well, work?
The Old Me
Before my diagnosis, I was working full-time in corporate finance. For months, I ignored the shortness of breath, the chest pains, and the waking up gasping for air, until the day I was told to go to the emergency room. My doctor said I needed a CT scan because they saw something concerning on my last chest X-ray, and somehow I felt guilty for taking time away from month end reports to address that. Thinking back, it’s crazy to me that some accounting deadline seemed like more of a priority than the possibility of a lump, or a clot, or what turned out to be my very enlarged heart (a tell-tale sign of severe PH).
The Gap in my Resume
After my longer-than-intended hospital visit, I didn’t want to go back to my cubicle and act like my life hadn’t just been turned around. Instead, I took months off to adjust to new medications and figure out the limitations of this body I was no longer familiar with. I went to counseling to grieve life as I knew it and struggled to figure out how to move forward with something that’s never been experienced by my family or friends. To some, it may have seemed like an extended vacation, but it was full of tears, bad reactions and having to prove to insurance companies that I was still sick every month. To be clear, there is no “recovering” from PH, at least not right now.
When my short term disability leave was over, I was asked if I was ready to return to work. I knew my old company wouldn’t make the adjustments I needed. The position was 40 hours/week, sometimes more, and the downtown office had no private space for me to do medical tasks. This felt like the push I needed to leave my unhealthy habits behind.
The Power of Choice
A positive take away from the pandemic is that it forced companies to reassess how they conduct their business and make “working from home” more of a routine than a luxury. That became a huge advantage in my search and made it so I could bring up my situation if I felt necessary, instead of it being obvious during a physical interview.
Like any job hunt, there were misses. I spoke to a headhunter who said I needed to be more willing to make sacrifices.. To what? My health? They said if not, I wouldn’t be able to “climb the corporate ladder” like their other applicants. Don’t be fooled into thinking there’s anything wrong with your capacity - you just have to find what works for you.
There were jobs that I couldn’t do because of the physical stress of the commute and ones that required standing for the entire shift. The state of COVID was also a factor: would I feel comfortable in a public workspace if needed? Even though I felt myself getting desperate and the financial strain was becoming hard on my partner, we both knew I needed to hold out for something sustainable given my situation.
What helped me was advocating for myself in interviews. I knew what I needed to feel safe and valued, so I asked for it. Just like any interview, it’s not just about the employer shopping for employees, it’s also about the job-seeker shopping for a company that suits them.
Equity Vs. Equality
Most companies are instructed to make their materials accessible to people with sight or hearing loss, or make their spaces accessible for people with mobility issues. Unfortunately, there’s no guide on how to deal with someone with an extremely rare, incurable lung disease (who’s attached to a pump in my case). So let’s make it easy and write the book for them. Whether that means accommodations for a sudden appointment change, or extra wellness days to account for chronic fatigue, or an extra break to perform a medical task; if it’s a good fit, flexibility can easily be applied to people who are differently-abled.
Set yourself up for success
Think about what your day looks like and make transitions to and from work mode easier for your brain to process. This might mean:
Having meds close by your workspace. Take a step away to focus on them, then hop back into things.
Not taking meetings when you’re on water pills or when you’re feeling short of breath.
Sharing as much as you are comfortable with and keeping management/HR in the loop as you see fit.
I have frank conversations with my team, and I will let them know when I’m away for a med change. It’s my way of creating disability awareness in the workplace, and a sign that everyone has a story that might not be visible at first glance.
Though it’s easy to get caught up in comparing yourself to others, especially when companies focus on metrics, completing things at your own pace is worth celebrating. Own those tiny wins and recognize how much you’re doing.
Life happens
Some people strive with routine, but it’s easy to overestimate your energy. I thought I could handle full-time work at home, but during training I was mentally drained, so I went down to 4 days/week instead. I still felt like I had a weekend, as well as an extra day to catch up on things I didn’t have the energy for after my shift (like chores/mixing meds). Burnout is very real, and as people with PH, we have to take extra care of those precious “spoons” so we can have the same quality of life as those around us.
As always, the most important thing is to do what works for YOU and to practice kindness with yourself along the way.
This has been #SquishyLungSyndrome, signing off.
Comments