Ever since I was a teen, I planned on being a working woman. At that time my plans were out of an idealistic view of what I thought it meant to be independent (not sure I was planning on being a wife and mom at the time) but still, I knew myself and that I liked working and the sense of accomplishment it brought. I would consider myself an almost Type-A personality so checking items of a to-do list and having a sense of routine puts me at ease.
I went to college for Music Education but realized halfway through my student teaching that the classroom was not for me. That was also the semester that I became ill and was diagnosed with endometriosis. Determined to find my dream job (and finally answer my call to the ministry) I began my graduate studies with an emphasis in Pastoral Care & Counseling. Thanks to illness, it took me 6 years to complete a typical 3 year program but I finished! I feel in love with chaplaincy during my half-unit of CPE but the long hours are keeping me away at this point.
So for now, I am an 8 to 5’er in a job that has nothing to do with either of my degrees but is still one that I enjoy (most days). While it does bring in added income and a sense of accomplishment, it also depletes my energy quite a bit, especially in my current state of health. While I’m doing what I need to do to get by, I’m working on figuring out a way to start my dream job which will include continuing writing here at A New Kind of Normal, finding ways to speak more and share my testimony, and open a non-profit to offer counseling and support to individuals with chronic illness. Anyone that has ideas on how to get started on any one of these things please let me know!
I get many questions about why I work since I struggle so much health and energy-wise, so I thought I would share some of my reasoning & answers with you. I have also asked 3 other lovely ladies to share their stories of working with chronic illness which will be featured over the next week or two! We all answered 8 pretty standard questions that are often asked when one works with chronic illness so hopefully our stories can help enlighten you!
1- What are your illnesses? endometriosis, Celiac disease, fibromyalgia & IC
2- What kind of work do you do? My title is Operations Coordinator but I oversee the administrative office of the maintenance area for a university. I provide customer service, handle invoices, and telecommunications.
3- Does your work match up to what you have a degree in (if applicable)? Not in any way, shape, or form!
4- Are you working because you want to or out of necessity? My current job, I am working out of necessity for health insurance. After my temporary disability this winter, we were hoping that I would be able to stay home but when I was denied health coverage by my husband’s plan, it was back to work. My time on disability did let me know that I would go absolutely batty without some type of job but I would like more freedom to be able to choose my work not based on health insurance.
5- How does your work affect your illness & overall health? At the present time, it consumes pretty much all of my energy but before this recent resurgence of endo, it would fatigue me quite a bit but I as still able to enjoy my evenings at home with my family. My job at times can be stressful which can add to flares as well.
6 – If you had the option, would you quit? I don’t think I would quit working all together but would look into the option of working part-time.
7- What is the positive benefit of working with chronic illness? The income is an obvious bonus but I enjoy the interaction with my coworkers and feeling like I am part of a team.
8- What is the negative aspect of working with chronic illness? Not having the energy I would like to after work hours is definitely a negative. Also with a limited number of sick days, I don’t always have the option of taking time off to rest when I’m flaring.
If you work & have chronic illness, I would love to hear your answers too!
18 comments on “Working With Chronic Illness: My Story”
Ok…hear are my answers for ya!
1. Basilar Migraine, Chronic Daily Headache and what doctor’s are currently calling Undifferentiated Connective Tissue Disease.
2. Labor and Delivery Nurse and Perinatal Bereavement Coordinator.
4. Both. While I love my career, it is overwhelming and exhausting. But I too need the benefits for me and my boys!
5. The long 12 hour shifts kill me! Sometimes I’m bedridden the day after a shift. During the shift, there is no rest time…it’s constant running. It’s draining and every part of me from head to toe hurts! Luckily, I can take leave whenever needed.
6. No but I just requested a part time position. Unfortunately there isn’t one available, but should one open up…I’m hoping to get it. I love delivering babies but I have to cut back!
7. Well it does give me a sense of accomplishment when I get through the work week. Even though I suffer tremendously, I can still push through when I need too. But there is also great comfort in knowing that when I do need off, I can take it and it without repercussions thanks to FMLA.
8. The pain and fatigue for sure!!!
12 hour shifts have to be tough! When I was a chaplain my on-call shifts were 16 hours but I at least knew there would be some downtime! I have SO much respect for nurses & hospital staff after my internship! Hopefully a part-time position will open up for you soon!
Interesting post! Here are my answers:
1. I had endometriosis as a young woman, but it has not returned, thank goodness. I am also gluten and lactose intolerant, but not officially celiac. I also have a problem with my lungs, I do not know what to call it in English (I live in Italy), but basically they don’t work right so I have chronic bronchitis.
2. I teach EFL at the university level and work freelance as a translator and online writer.
4. Both. I love both teaching and translation.
5. I don’t think my work affects my illness, but my illness affects my work productivity. When I get sick I can’t do anything and fall short of my commitments.
6. No, but I would like unlimited sick days! 🙂
7. Well, I find all of my jobs fascinating, so my work is fulfilling and mentally stimulating.
8. Not being able to always be up and running, missing lessons and/or deadlines.
Thank you so much for sharing a part of your story! I am so glad that you have a job you love! Unlimited sick days would be AWESOME!
I am glad you are able to work, since you find it fulfilling. I hope you are able to get into a situation that fits your life better.
I worked for a long time after I got sick. It eventually got to the point that I couldn’t work anymore and still be a mom. Luckily, my husband’s job is enough for us.
I have a chronic headache (6 years), chronic fatigue, thyroid trouble, chronic depression, PTSD, and several symptoms that may or may not be related to one of those: dizziness, nausea, hypersensitive to sound, touch, and smell, occasional blurry vision.
Chronic illness is so tough because you have to learn to go on with life and it’s not usually visible. People who don’t have it don’t get it.
Thanks for stopping by & sharing your story! I know there is going to come a day where I’m not able to work anymore. I hate to think that way but if I’m going to be honest with myself I’ve got to accept it. Hopefully by then a door will open up with either insurance or qualifying for disability! Thank you for visiting!
Oh, stopping by from SITS, by the way.
Not really directly answering but wanted to share a link to thoughts on just generally facing life with pain: http://clg1213.blogspot.com/2011/02/living-with-both-pain-and-people.html
Thanks for sharing the link!
You and I have a lot of similarities! I also have a degree in counseling.
I’m not sure how to help you get started in the process of finding your dream job, but I can refer you to a really awesome book that helps you in that direction. It’s called “Quitter” by Jon Acuff. It’s a fantastic, easy read and it gave me a lot of clarity when it comes to finding my dream job.
Thanks for the recommendation! I will have to check that out!
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I was diagnosed with Crohn’s Disease 10 years ago by an idiot GI doc who should have his license taken away. I have 2 symptoms pain in my back & pain in my stomach. The only problem is that from 7am to 4pm I have no pain. Typically, a Crohn’s patient has pain 24-7 if they do not take any meds. I was given meds to try by 3 different GI docs. The reactions were worse than the pains I already had. I had 3 GI docs put me through 3 of the same tests. The results each time were the same: Inconclusive.
My wife & I know I do not have Crohn’s, but so far no in Arizona can figure out what I have or why I have the pains I do from late afternoon until 7am the next morning.
This has restricted my life after the 4pm time period & has been so much fun that again, No Gi Doc has helped.
Thanks for sharing. For years I have struggled with fatigue and lots of vague non-specific symptoms but this time last year I was diagnosed with hyperparathyroidism. Had the surgery in March and the improvement has been amazing. There was no way I could have considered the Atlanta trip before the surgery.
Thanks for sharing and so glad you made it to Atlanta too – were you not exhausted?
Oh I was most definitely exhausted! It took me several days to recover but it was so worth it!
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