Chronic Illnesses are getting worse and I don't know what to do for work
Payton C. on June 8, 2022
Career Change, Career Management, Image/Professionalism, Work/Life/Cancer Balance
I was diagnosed with ALL at 16 years old and finished treatment and college at 19. I know I should be happy that I have been in remission for so long and I am, but I feel that everyone thinks that I should be normal now. The treatments left me with a slew of chronic illnesses, and I have some that aren't related but they don't help my situation. My biggest issues are my labs and my endometriosis. I had some labs Friday which are the only real way to know if it's back or not considering the signs and symptoms are my everyday life (paleness, loss of appetite, chronic fatigue, bruising, weakness, and shortness of breath). My labs were borderline which my doctors told me my labs and immune will never be normal again when I was younger. I deal with chronic anemia, sleep for 12-20 hours on my off days, and get sick very often. Even though my labs weren't super low Friday by yesterday I knew they had dropped because I was so weak and freezing. I had my house set to 77 F with hoodies and thick blankets to warm me. I finished the last of my endo treatments this spring and have no options other than more surgery, so my endo is flaring as well. All in all, I felt terrible. I am a private duty nurse, so I stay with the same kid 7-7 fulltime providing care. It is a rotating schedule, so it is supposed to be 3-4 days per week if there is another nurse working opposite of me. I texted the other day nurse to see if she could cover today and she couldn't due to appointments for her kids and our company doesn't have any PRN nurses, so the father had to cover my shift. I feel terrible because they depend on me so much, but this happens all the time. The other day nurse (before this one) would call out frequently and I end up work OT stressing myself out and then I get sick. The family is so nice, and I love my patient with all my heart, so I hate disappointing them but at the same time I don't want to go in feeling this weak and fall asleep driving or pass out while no one is home and my patient not have care. The family knows my medical history and is understanding but at the same time sometimes I feel that they and others see me having a "good" day (can go for a run or go to the gym) and feel that I'm exaggerating on my bad days. The only thing that makes me think that is that the father constantly tells me to work nights and go back to school for my RN or BSN. I have all of my prerequisites for them, but my health got worse and worse, and my father got AML at the same time. I emptied my savings caring for him in a year and even if I had the money I can't because of my health. I want to continue to be a nurse for as long as I can but when we move next year, I may switch to part time. I also need to find something to do from home. I've thought about going back to school for a different field but every time I start to look into it, I get sick. I do online surveys when I'm stuck in bed, but it only brings in a couple thousand per year. I split the bills 50/50 with my husband and even though I know he'd take care of me financially I don't want him to have to. My first quarantine when I was 17 drove me insane. I tried crafts but that didn't work. I may be weak, but I still want and need to do something. I want to contribute to society and help as much as I can I just don't know what to do. I just feel like I am stuck and a) wish that people would understand how my health fluctuates more and b) need to figure out how my career path can work over the next few years.
Thank you and I'm sorry if I rambled it's a lot and I'm so upset
1 Comment
Nicole Jarvis, LMSW
Jun 9, 2022
Cancer and Careers Staff Comment:
Hi Payton,
Thank you so much for sharing your story with us. I’m sorry to hear how challenging it’s been for you, and there’s no need to apologize for feeling overwhelmed! Unfortunately, we hear from survivors of all ages that there is an expectation to “get back to normal” after treatment, but you, and many other survivors, know that’s simply not realistic. It can be hard to focus on a plan forward when you feel others have certain expectations of you and the stress of trying to meet those expectations can often cause people to shut down or get sick. So, first, I want to make it clear that you shouldn’t blame yourself for not “rising to the occasion” or feeling like you’re not trying hard enough. You’ve been through a LOT, both physically and mentally, and you’re still focused on being productive and enjoying your career – you should take pride in that! It shows a level of resiliency and drive that many people do not have.
With all that said, it’s understandable that this is frustrating and creating a challenging situation to figure out. I encourage you to take a step back and look at your situation in both the big picture, as well as each individual factor. It sounds like there’s a certain variability in terms of how you’re feeling day-to-day, so as you assess what you want to do for work, it’s a good idea to consider how that fluctuation plays into your ability to work. By that I mean, what types of flexibility do you think you’d need? Perhaps being relied on as a sole caretaker is a bit too much responsibility at this time, as there are days where it sounds like you really can’t work, but you’re also feeling overwhelmed by the responsibility you have to care for someone else in addition to yourself. That is not to say that nursing is entirely out of the question for you, but rather, is there a position that could afford you more flexibility with your schedule. Is there some administrative work you could be doing on days you’re not feeling physically up to providing such specific care? If you’re okay with moving in a different direction with your career it is good to start thinking about what interests you. What makes you feel fulfilled? What do you enjoy? If you think about nursing, what is it that brought you the most satisfaction? Are there other jobs that might afford you that same level of satisfaction but might require less of the physically demanding work? Some other ways to really assess your interests and options could include looking on LinkedIn and connecting with people who have jobs that sound interesting, networking with people in your community who might be able to connect you with jobs that fit your needs and wants, looking on Glassdoor to research and explore companies that might be suitable for your specific needs, and just spending some of your downtime getting in touch with what you enjoy.
When thinking of your situation as a whole, it’s understandable that it may feel like too much of an endeavor, so the piecemeal approach can be really helpful so that the whole process feels manageable. I want to reiterate the importance of pacing yourself, take things one step at a time and setting small goals for yourself can be really helpful. If you look at a full week you can plan out each day with one task that will help you, and the ability to cross that task off each day can motivate you and relieve some of that pressure and stress. For instance, breaking down one week could look like the following:
These don’t have to be wildly time consuming, you can tell yourself you will take one hour per day, to work on it, and spend the remainder of the day taking care of yourself and whatever else you need to do. The idea here is that by checking these things off your to-do list, everything feels just a little more attainable and with that, the entire situation can feel like less of a hurdle.
Cancer and Careers has a number of resources that I think may help you determine what the most realistic next steps are, and how you can accomplish your goals:
If you have additional questions, need any clarification on what I mentioned, or would like to speak with a staff member, please don’t hesitate to reach out to cancerandcareers@cew.org.
Best of luck as you figure out the direction and path you would like to go in!
Warmly,
Nicole
Nicole Jarvis, LMSW (she, her, hers)
Assistant Director of Programs
Cancer and Careers / CEW Foundation
Ph: 646-929-8043
njarvis@cew.org
www.cancerandcareers.org
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