Living with Cystic Fibrosis: Jobs

Hey friends! So our CF adulting continues today with jobs. How do CFers pick a job? Should they work or should health be the full time job? What about your career while being a caregiver? This is one of the topics we get asked about most. There are so many different aspects, so many different decisions, so many different factors…. this post could go on for days. So I decided to present you with how we make our decision about jobs in general around here- really one question: what is the goal?

 

Right before Danny and I first got engaged he had attempted a career launch with a job in his dream field. When your 24 the job is basically “gofer”- go for this…. go for that… and run yourself ragged in an attempt to prove useful, somewhat educated and worth a shot at moving ahead. Danny had everything he needed – the brains, the desire, the degree – but he did not have the physical stamina. We got engaged December 24, 2009- the fall prior Danny had spent days in and out of the hospital while trying to make this job he wanted work. By the time he got that ring paid for and I said yes, we had our first big couple decision to make: should he keep working if it just making him sicker. We decided no and Danny left that role (on great terms- what an awesome team who was so supportive and willing to try and work through it) and he would take a part time role and focus full time on his health. For the next 6 years that would be how we made the decision for Danny’s job: health first especially as the reality of transplant became more clear.
Bessette Family Meeting- When We were Working Together
May 2016
Living in the DC area on one full time salary is hard work. I loved my jobs and had been blessed to have some success early on in both finding my path and walking it. As I got promoted and more opportunities came my way, we would make it work. This included sacrificing – like living with both sets of families at different points and I had a few additional jobs too when I could get free lance gigs. Danny even made himself my admin at points to keep all the plates twirling! In those seasons the goals were to keep me moving forward so we have options, while Danny focused on health.

 

As we drew closer to transplant health became the bigger goal and so I paired down my jobs, Danny had stopped working, we got guidance and help from COTA and I took a role with a company that was aware of my situation and able to provide family leave. It was a role I really enjoyed, but it did not always challenge me – and this meant I sometimes felt frustrated. But the goal at the time was health so we kept on trucking.
Jac, Dad and Grant at DHI Show
May 2016
Post transplant once Danny got healthy we sorta had a new goal: live fully. We had been living safe and secure in roles that kept us consistent, but didn’t necessarily challenge or scare us. There is nothing wrong with this- but we also had this itch to reach for something new and we didn’t have quite the health concerns lurking at our door. It was at this point we just jumped: we both went after new roles we really wanted without any certainty of what life after starting them would be. For me it has worked out really well and I am learning and growing constantly. For Danny – it was impressive that he passed all the physical requirements, but ultimately he would not be able to proceed. One win and one loss- yet no regrets.
Working Day
April 2016
My new role has taken a lot of my attention away from us and required Danny handle more of this medical season alone. Danny’s attempt didn’t land him where he wanted to be… but he has found an awesome role in a different capacity in the same field and is really happy. The leaps worked out. But the key to remember is they were at a time where the goal could be to take risks. And as we face each new phase of this odd medical bump, we have had to regularly return to our goal and make sure it still makes sense. If the answer is yes, then we adjust.

 

Yesterday’s post I feel like I had a more difinitive experience and thus opinion. Today’s all I can tell you is that we constantly are having to reevaluate, revamp, and adjust. But I can for certain share that none of it has been a waste. Was it hard to move back in with family as grown adults who are married and working? Yup! Do we still struggle with when I should be at work and when I should be at Dan’s hospital bed – of course. But I find if you have agreed upon a goal, it can help you stay steady in the storm…. and you will also know when it stops working that is the time for a new goal. This system has really helped – even if it is constantly changing.

 

If we can be of help as you navigate the world of careers as either CF or caregiver – please let us know. We don’t have the answers, but we have prided ourselves on getting creative and I know we can reiterate the truth if you need to hear it: this is not easy. And I know I have already really encouraged the importance of “doing you” when managing CF life (both as a patient and caregiver), but please keep in mind this is a very hard topic. The varying degrees of illness makes this an area that can be super delicate and range so drastically different  person to person or couple to couple. If you feel lost on this one – your not alone, but I also believe you can help find a path for you…. just don’t give up!

 

Thank you so much for reading and remember to make it a great day!
Jackie

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