I have lost two careers due to chronic illness. My academic career where I was going to go for my Ph.D. but due to unmanaged migraines that had become chronic and unmanaged fibromyalgia I could not. I took a banking job then but that just made the situation much, much worse and adding in Major Depressive Disorder. So that went downhill no matter how hard I tried to push through the pain. I work as a part-time teller now, although have been off for a year now due to a vestibular disorder that should be treated this year.
So I know how it feels. The first time, that hit me hard in the feels. Then when I thought I found a reasonable replacement to satisfying me, well, I tried to hold onto that Hard, man. And failed and failed and failed.
This results in:
Low self-worth
Which goes hand in hand with low self-esteem. Because try as hard as you might and no matter what you do, you fail. And you feel in your heart of hearts that was a Personal failure. Not that you were not capable of doing it but you personally failed at doing it. The more times this happens the less self-worth you have and the less confidence you have to ever try something again. Because the fear of failure that has become so well known to us, holds us back from trying something we might be able to do. But also might not. And that might not is the one we are keenly aware of.
The void
When all of a sudden you find yourself unable to work you have to fill the void of work during the day. However, you are limited by your health and not capable of much and everything you can do comes with a cost. But we need something to occupy our time and keep us interested, motivated, and productive. Because not working, when we feel that we should be, but can’t, can lead to depression. And isolation. How we fill that void differs between us all. For me, it is blogging and writing. And socializing every once in a while to stave off the isolation.
Productive years of our lives
We are often chronically ill and disabled during the most productive years of our lives. This naturally means loss of income. It means income instability. It means we feel we are not productive members of society. We get comments like:
Must be nice not to have to work
I wish I didn’t have to work
It is like a vacation every day!
You’re wasting your potential
I still go to work and I’m sick with blah blah blah.
Which are all hurtful ways of saying… you Should be working according to societies standards. And you feel stagnant. And functionally useless. And not utilizing your full potential.
Mourning
There is always a period of grieving when we lose our capacity to work. And this process can be short or it can take years. We mourn who we were and we mourn who we will never be.
Guilt
Due to the financial insecurity, a lot of guilt comes with chronic illness and loss of work. Like if only we could force ourselves to do it, we wouldn’t be in that situation. And our significant others wouldn’t have to deal with our failure to provide income.
Resentment
It isn’t just one day we were working and the next we were not. It is a decline in our capacity to work overtime, sometimes a long time if we really push ourselves (which makes things worse) and this can lead to ‘issues’ in the workplace. And we can resent a lot of the pain and hardship they caused us while we struggled so hard every day. We have to let that go though. People often do not know how to deal with chronic illness in the workplace… and a lot of people get it wrong. So wrong it is incomprehensible. But you are not to blame for it. Their failure to understand and compromise and accommodate is to blame for a hostile working environment when you are ill.
Self-identity
Fact is, we place a lot of our self-identity in what we do for a living because society does as well. One of the first damn questions you ask someone to start a conversation. And then the sudden lack of that can cause us to founder for a bit trying to determine who we are with illness. We certainly feel like we shouldn’t define ourselves by our illness. That seems like it belittles who we are as a person.
We all have struggles like these when we go off work for short-term, long term, or forever. Takes us a bit to orient ourselves to be chronically ill and unable to work. And ways to fill the void of work while at the same time improving our self-worth and adjusting our self-identity. But all that takes time. And in the beginning, we mourn and we feel guilty and we blame ourselves for something completely out of our control.
Other posts to check out:
Chronic pain: Fake it till you make it
Chronic illness and resiliency
Eugh, yes yes and yes! I lost my job due to numerous surgeries and ongoing declining health, so when you say “that hit me hard in the feels” I’d totally agree. The comments you get, the guilt, the sense of mourning.. you’ve covered this so well. I feel I need a little cry after reading this as job and career stuff still get to me so much. There’s no positive thinking around the practical side of things, that you need a job and income. Very well written and I hope this can help others without chronic illness also see what it’s really like.
Caz xx
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It is a hard one for sure. People do not realize how difficult it is for us.
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I lost my job 7 years ago due to chronic fatigue and fibromyalgia .I have tried to go back, but I know is my limits. You feel worthless, guilt.. lonely & lost..
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I was in denial for some time. So worked, exceeding my limits, go on leave, come back same thing, go on leave, come back. Over and over again. Then tried part-time and that still made me worse. And yeah you feel miserable because you can’t, but you just Can’t.
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Really well written Nikki and pretty much sums up what most of us have to deal with – practically and emotionally. I’m attempting a foray back into the world of work so we’ll see how that works out but it’s tough, really bloody tough. Sending love x
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It is difficult to transition back to work. I always have this fear I will fail. And then I do and feel worse. But it really depends on how our health has improved or the type of work or the hours
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Yes, I’m a bit tentative about it and there’s always that worry that you’ll prove yourself right about not being able to accomplish the change but I’m giving it a go, taking care with self care along the way x
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It is always worth trying. Confidence will come with it as you go along. Just hard in the beginning when we feel maybe we can’t. But good luck!
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This really hits home for me. Thank you for sharing!
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You’re welcome. I is something that hit me hard for sure
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I think about the possibility of this often! This is a great article to prepare for the undesired possibility…
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I fought tooth and nail to keep my career… a little too much for too long though. Can’t push those limits forever. They push back. I hope that it never becomes a possibility for you. Financially stability is a real good thing to have when we are ill
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It took me about a year to get through the mourning phase of having to leave a career I loved. People will say all sorts of rubbish like wishing they didn’t have to work – but I bet they’d never wish to have the fatigue, pain and huge limitations, not to mention the loss of financial security.
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Exactly. And the loss of financial security is brutal to deal with along with everything else.
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Such a good piece. It does take time because it’s not just giving up work, it often feels like we’re giving up part of ourselves. My pain was over the top when I gave up work because I had pushed myself too hard, so I had a lot of physical recovering to do. Resting, and sleeping helped, but I felt like I’d lost who I was and it took a long time to find myself again.
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Same here. Took a long time to find my sense of self again
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I worked so hard for a job I loved. Started getting sick. Hashimotos and fibromyalgia that took 4 years to get diagnosed. I have always been able to push through for anything I have ever wanted to do. I was a firefighter driving the firetrucks. LOVED MY JOB. I wanted to die when I realized I could be putting my coworkers in harm just not being at my best so I had to leave. My heart is broken and 4 years later I am still grieving. I have lost my sense of self. In a lot of pain. I do have good days but more bad than good. Hope the best for anyone dealing with health issues. You are not alone.
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Yes, the grieving process can last a while. It did for me. And I struggled with it a lot. Trying to find a new sense of self when you are floundering is hard. It is just hard.
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This really resonates with me, it’s like you read my mind! I’m on the verge of going out on, for the time being, short term disability and everything you wrote goes through my head daily. Although I’ve taken a step back at work recently, making it an official leave is terrifying.
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It is scary for sure but sometimes necessary. I wish you all the best with the process and hopefully when you return you will be ready
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Yup, yup, yup. You got that right. I got all those feels. My illnesses have stolen all the things I did, all the things I was good at, all my careers. And I miss them. And I hate that I lost them.
@dSavannahCreate from
dSavannahRambles
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Me too. Not a good feeling
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Thank you so much Nikki for putting into words what it is I have been going through since 20th October 2017. The date when I “officially” stopped & admitted I could no longer do the job that I was born to do (in my mind at least) – primary school teacher. To top it all off there is the guilt that I feel when my mum (who like me has fibromyalgia, seronegative RA & OA), who is 70 years old, who is still working as an office manager/welfare coordinator and yet she has not stopped working & here I am stopping work because I couldn’t physically do the requirements of my job. The guilt & shame about “giving up” that I still feel is at times over-whelming when I think that my mum hasn’t. My mum is amazing though & has been my biggest supporter when it came to taking care of my health. I find it so difficult & tiring to try & explain to folk that even though I look ok physically, in reality it is a Herculean task just to get dressed each day, something that is taken for granted by those who don’t have chronic illness.
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Illness varies so you should feel guilty your mum can still work while you cannot. I know guilt and shame are horrible beasts though. Seems hard to shut that down. But we do deserve to take care of our wellbeing and sometimes that means accepting we cannot work
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Thank you for posting this. So many people don’t understand. I’ve been disabled for 6 years beginning when I was 36. It devastated my sense of self, especially after the first 2-3 years. I had been under the assumption/hope that it was a temporary setback and when I realized it wasn’t I was shattered. I finally am increasing my health to the point that I may again be able to work. Getting over the thoughts of failure and fear has taken a great deal of work. I’ve found EMDR (Eye Movement Desensitization and Reprocessing) therapy to be fundamental. It’s done by some therapists and truly is magic. I highly recommend it! Love to you all and wishing wellness and grace. Oh, Reiki has also been a tremendous tool for recovery.
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Yes it is really hard at first. I am not sure when and if I can go back to work but the aim is to eventually get back to part time at least.
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