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Deciding to stop working.

June 15, 2012

One of the most difficult challenges those of us with chronic conditions face is deciding when it is necessary to stop working.  Many people dealing with chronic illness are able to stay at their jobs if the demands are compatible with their energy level and treatment needs, but some have to decide to move to less demanding work or stop working altogether.  It’s a very personal decision and one not lightly made.

In the last few months I’ve discussed this issue with many women (and an occasional man, most of my support network is female).  People have different thresholds for saying enough is enough.  Some will work until they practically drop dead, while others decide they need to stop while they still function to some extent in an effort to slow or halt disease process.  Sometimes the need for frequent doctor visits or treatments interferes with work so much they have to quit while some have a flexible schedule that can accommodate frequent absence for appointments.

The decision is usually complicated by financial concerns.  A few people are lucky enough to have a spouse who makes enough money to pick up the slack and whose job provides health insurance benefits.  In my case, having a disabled husband who doesn’t work, it took much thought and exploration of resources for me to work out the financial end of things.

After my heart attack, I fully expected to return to work in a few weeks and get back to a normal schedule.  My leave was extended a bit following a second hospitalization one month after the heart attack, but after that I did well in cardiac rehab and started working again.  I noticed frequent chest pain at work, but denied it at first.  I got back to my regular 36 hour per week schedule after 3 months or so.  I was tired, but that didn’t surprise me.  I tried to keep up my exercise hoping to improve my endurance, but I was often exhausted and ill on Mondays following my 3 12 hour days.  Although my job was pretty easy, with a lot of down time on the weekends, I still left early at times due to not feeling well.  Within a few weeks I was in the hospital again with worsening symptoms.  This led to medication changes, more testing, and a round of EECP (Enhanced External Counterpulsation) treatments that were quite time consuming.  I never returned to full time work.  My FMLA (Family Medical Leave Act) days began running low.  My co-workers’ patience began wearing thin.  I still had chest pain at work and days of sick exhaustion after working.  Finally after another hospitalization, my fourth in less than a year, I decided I couldn’t keep going.  Rather than improving, my condition was worsening.  I felt that in order to have hope of healing, I would have to reduce my stress and energy expenditure significantly.  I took a medical leave of absence and started the clock for my long term disability insurance benefits.

I felt a lot of guilt and shame at first about stopping work.  I knew I was sick but knew that other people were much sicker than me. I was also still dealing with my doctors’ reluctance to attribute my symptoms to a cardiac cause.  Whatever the cause, my symptoms were disabling and I had to do what was right for me and my family.  None of the tests we did showed other causes for my symptoms, but I was still feeling I had to prove myself.  The process for applying for my disability insurance benefits was disheartening, especially when the doctor who agreed to document my condition flaked out.  I started the process of applying for Social Security Disability (SSDI).  Even if I eventually get better, it takes so long to get through that process it is foolish to wait.

In some ways, my condition has improved since I stopped working.  In some ways it has worsened.  At least I rarely have those days of feeling so exhausted I am ill anymore.  I try to stay busy with constructive activities that are within my capabilities and stimulate my mind.  I still have to rest in between outings and rarely plan more than one or two things outside the house in a day.  Sometimes I can’t manage that much.  But I am doing all I can to improve my well being and that’s what counts.

4 Comments leave one →
  1. June 15, 2012 8:13 am

    Becoming myself, my NEW self, and grieving the loss of my old pre-disease identity seems to be the work before me. It turns out to be really complicated. It feels as if I’ve been tossed into the air, and that I’m now coming to earth slowly – watching the approaching ground coming up to meet me. Sort of a controlled fall.
    As I fall, I have a little time to plan where my body and soul will land.
    I also think of this time as a long moment to deconstruct my previous life, find the critical things about it I want to keep and then discard or put to rest the parts I don’t want to keep.
    This applies to personal relationships, to material belongings, professional relationships,
    old group associations, hobbies, and my spiritual orientation.
    I pull back and look at it all and bless it, my life, and let go.
    Some things let go more easily than others.
    That’s where my therapist comes in. that’s where I can say it all out loud, where the subject is mostly ME. I believe we all need that kind of time to reflect, to discover and to put together our true deeper selves. Without psychotherapy, I have no idea where i’d be in this process.
    The good news is that it’s getting better, I’m becoming who I am more deeply. This is working. Today is a good day.
    Keep moving, rest when necessary, be kind to myself, make new friends with people who are also on this path. Breathe deeply. Meditate and pray a lot.
    There is no blueprint for this life, yet somehow it falls together.
    May it ever be so.

  2. Carolyn Thomas permalink
    June 27, 2012 5:06 pm

    Thanks so much for these very personal observations.

    When I found myself in a similar situation after my heart attack, I also found that just the mere act of applying for disability benefits was beyond exhausting. I needed others to help me just to complete the eight pages – it all seemed too overwhelming for me, which made me feel even WORSE (my ‘old’ self could have whipped off those eight pages in no time flat with both hands tied behind my back!) Then the anxiety of waiting weeks for a YES or NO response was doubly stressful (and I’ve heard from others who waited MONTHS, all while watching their life savings dwindle!) It’s an impossibly cruel experience to put people through when we are at our most vulnerable.

    Each month, my longterm care insurance plan now sends me a confirmation letter about my disability direct deposit that month. Each month, just seeing the return address on the envelope in my mailbox can make my heart sink: is this yet another request for yet another round of medical forms for my doctor to fill out (for $175 in cash that I don’t have – her current ‘form-filling-out’ rate) to convince them that I’m still unable to return to work? And is this the month my claim will be denied? I recently heard from a police officer on medical leave who experienced a similar sense of anxiety and dread at just the sight of the return address on the envelope – it was so bad that he had to get his wife to open the letter for him every month.

    Nobody warned me, back when my doctor ordered me off work after a one-month, half-time return to work trial (a spectacular failure!) that just applying for benefits that are part of my longterm employment package from working at the same hospital I was admitted to after my heart attack would be almost as distressing as the cardiac event itself!

    I also really like Melissa’s sound advice for living with chronic disability – beautifully said!

  3. June 27, 2012 6:16 pm

    Yes, I get those envelopes, too. So far nothing bad in them, but I do wonder before I open them if this is the one. When I first got approval of my long term disability claim, I felt so relieved. Within a couple weeks my illusions were shattered when I was notified that since my condition was primarily psychiatric the insurance company was only approving my claim for 6 to 8 weeks for medication adjustments. I was told this shortly after my last hospital stay. My condition is primarily cardiac, however my cardiologist refused to document my disability and my primary care doctor followed his lead. Only my psychiatrist stood by me. After I had a near complete meltdown on the phone with my case manager, I was told my condition was considered “unstable” and given another 4 months. How generous of the company I’ve been paying all these years for this benefit!

  4. September 1, 2012 4:15 pm

    My former employer and I decided it was time when my work performance and their impatience for time off came an issue last October.
    I’m no longer exhausted all day from working a full time job, managing our home, family and pain. I’ve even quit taking opioids after 11 years and pursue alternative pain management methods.
    I have filed for SSDI this January, understand it’s a very long process but with my husband and son’s support I believe one day my claim will be approved.

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