Thoughts on returning to work if you’re a heart patient

~ Carolyn Thomas

by Carolyn Thomas   ♥   @HeartSisters

A list of five Choosing Wisely recommendations from the field of occupational medicine caught my attention the other day. For those of you who have never had the pleasure of working with a real live occupational therapist, they are under-appreciated healthcare professionals who help recuperating patients develop, recover, and improve practical skills they need for daily living. Basically, the goal of the Choosing Wisely campaign is to help reduce waste in the healthcare system and avoid patient risks associated with unnecessary treatment. It’s all good. But the part of this occupational medicine list from Choosing Wisely Canada that stopped me in my tracks was the first recommendation on this list:

At first blush, this recommendation seems to make sense. Doctors are urged NOT to approve time off from work following injury or illness unless medically indicated because “supporting absence from work creates disability which in turn negatively impacts health.”

The negative stereotypes such statements bring to mind include those lazy slobs stretched out on the couch eating Cheezies and watching Wheel of Fortune day after day, pretending to be sicker than they are just to get a free holiday from the stress of the workplace.

While it may be true that such people taking advantage of the “doctor’s note” do exist, what this recommendation from the Occupational Medical Specialists of Canada misses entirely is the reality for many of us diagnosed with chronic illness, and especially those living with an invisible illness (i.e. most of us).

It is a sweeping overstatement to claim that “supporting absence of work creates disability.” 

It’s being diagnosed with a chronic and progressive illness that creates disability – not the absence of work.

When the dust settled after my own “widow maker” heart attack, for example, all I wanted to do was feel like my old self again.
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I believed that, much like the Choosing Wisely folks tell us, what would most help me to feel normal was just getting back to the public relations work I loved at the Victoria Hospice & Palliative Care Society – as soon as possible.  I was also desperate to go back to work because I’d already used up all of my paid sick time and all of my vacation days. I knew that I simply could no longer afford to stay home with no income. But because of ongoing symptoms caused by my as-yet undiagnosed coronary microvascular disease, I was able to work half-days only to start during my return-to-work trial.
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After the first rush of welcome-back hugs from our hospice doctors and nurses, it soon became apparent to me (and worse, to them) that I was no longer able to function while juggling multiple deadlines, all due yesterday – the normal hair-on-fire pace in the world of non-profit PR.

I’d enjoyed a high-profile and successful public relations career for over three decades in corporate, government and non-profit sectors. Being forced into early retirement in my fifties hadn’t ever been on my radar.  So I could scarcely believe that this is how my career would ultimately end a few weeks later, being sent home, weeping, in the back seat of a taxi, the last trip home I’d ever take from work.

The realization that I couldn’t continue working was devastating for me, mostly because I too had bought into the Choosing Wisely dictates that said “supporting absence of work contributes to declining health, slower recovery and disability.”  I didn’t want to be that kind of patient. I didn’t want to be sick. I wanted and needed to go back to work to prove to myself and others that I was going to be “normal” once again.   See also: “When We Don’t Look as Sick as we Feel

Not all experts are fans of Choosing Wisely’s blanket get-back-to-work recommendations. As the emergency medicine physician Dr. Marc-David Munk once explained to Prepared Patient® readers:

   “Choosing Wisely is promoting itself as a means to ‘spark conversations between providers and patients.’ It has partnered with Consumer Reports to disseminate the list of overused and unindicated interventions to patients. There is a critical point to be made about Choosing Wisely and other campaigns, such as the World Health Organization’s and the U.S. Centers for Disease Control’s campaigns to improve provider hand washing:  all expect consumers to carry the water when it comes to ensuring health care appropriateness.”

The trouble is, of course, that patients are often the least able to do this heavy lifting.  Even trying to convince a physician to sign a request for time off work, for example – never mind sign off on a disability pension application! – can become an unbearably overwhelming challenge for those who are living with illness or injury. That doctor wields the pen that can approve or deny that request with one stroke – just like that. What if I can’t get that form signed? What will I do? How can I survive?

Being able to return to work after a serious cardiac event can hinge upon several factors.

Many heart patients recuperate uneventfully at home for a few weeks and are able to return happily to work with only limited restrictions, almost as if nothing’s happened.  (Sometimes, however, this return-to-work approval can depend on if you’re a woman or a man.  See also:  “My Husband’s Heart Attack was Treated Differently Than Mine”)

Some attempt a return-to-work trial as I did, but find it difficult or even impossible to keep up with the physical or mental demands required of the job.

Depending on the severity of the heart condition, damage to heart muscle or valves, and ongoing cardiac issues, this may mean permanent retirement, a change to part-time employment, applying for a disability pension (as I ultimately had to do), or a significant career change to a less demanding occupation. Agencies that administer disability pensions (like my own hospital’s employee extended health benefit plan) categorize two basic types of inability to rush back to work: inability to work in my former occupation, and inability to work in any occupation. These options are meant to preserve and protect health – not serve as some kind of public virtue signal that “restoring working capacity” is somehow the sole goal of recovery.

If you’re unsure, talk to your physician about the limitations caused by your own diagnosis may have on your ability to return to work.

NOTE FROM CAROLYN:  Read more about working (or not working) after a cardiac event in my book, A Woman’s Guide to Living With Heart Disease (Johns Hopkins University Press). You can ask for it at your favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (if you use their code HTWN , you can save 30% off the list price).

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Q:  Have you ever experienced pressure to return to work faster than you felt was appropriate?

See also:

How working – and not working – affects heart disease risk

Handling the homecoming blues: the third stage of heart attack recovery

Convalescence: the forgotten phase of illness recovery

Published by Carolyn Thomas

24 thoughts on “Thoughts on returning to work if you’re a heart patient”

    1. Thanks so much for taking the time to comment! I’ve been so impressed by how many women (and some men!) are, like you, not here because they’re heart patients, but because we share so many of the same issues around being a patient. This is particularly true for my regular readers with breast cancer who seem to especially relate to the patient experience stories I tell here – no matter the diagnosis. Being “reluctantly retired”, for example, can bring up the same emotions of loss, fear, sadness, etc. even when our diagnoses are very different. Take care and best of luck to you…

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  3. This article was so timely for me, as I am trying to return to work, but not so much after a cardiac episode as after being a stay-at-home mom since 2000 (homeschooling 3 kids through high school graduations).

    I have had 2 stents implanted and have avoided heart attacks both times, thankfully. Homeschooling your kids and caring for your family is not a stress-free occupation by any means (especially with many activities and a highly sensitive drama queen teenager!), and I’m really glad to be done with that job, but at least when you are your own boss you can arrange your schedule with a great deal of flexibility. Reading a lot of good books together with my daughter did turn me into a total couch potato, though, and I think that’s where a lot of my heart problems began. My first stent came right before our senior year, which was my last year homeschooling as well as hers. Things had to change that year, stress had to be taken off of me, so she did her last year at community college, which was kind of the plan all along but became completely necessary for me when the time came.

    One aspect of returning to work after a cardiac episode is rehab — if you return to work, you may not be able to participate. After my first stent, I did rehab for 18 weeks (36 sessions) and lost 37 pounds at the same time on Weight Watchers, and I felt like a new person. 36 more sessions followed the second stent which I received about a year ago. Still at home for both times with a lot of flexibility in my schedule. It was a lot harder the second time around and I wondered what kind of job I could ever find that I could do, physically speaking.

    This summer I was finally able to re-enter the work force part-time when my husband’s office needed a fill-in receptionist after the one they hired walked off the job after only 6 days. I volunteered to take on the job and they were very happy to have me, and all they wanted me to do was answer the phone, which often rings less than once an hour. That might sound like a great no-stress job but I had to find things to do to keep myself from going bonkers from the frustration of total boredom. So I sit and do word puzzles and read books all day, and they don’t mind because their office has to have someone answer the phones for tech support. And what I thought would be a week or two while they found someone else turned into all summer — this coming week will be my last, making 14 weeks altogether. Great for our budget (I should have found a job a long time ago because we really needed the money) and no heart problems — except for lack of exercise!

    The job entailed hours of sitting at a desk staying near a phone. I was able to get up and walk around and stand when I wanted to (greatly encouraged in this office, everyone else has a standing desk but not the receptionist), but it was really not enough. I have mobility issues (arthritis setting into my hips) along with the cardiac issues, and sitting sitting sitting all summer long has just about ruined me. Too tired to exerbike when I got home, so that was my fault — I should have forced myself. But my whole body aches from the inactivity so it was hard to make myself do anything when I got home.

    All this to say that it might be better to NOT go back to work if your job is sedentary like that. At home you have the freedom to exercise as much as you are able and to participate in cardiac rehab too. One more thing to factor in when you talk with your doctor about returning to work.

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    1. You bring up so many good points, Meghan! For example, cardiac rehabilitation programs are, in many cases, designed for the convenience of the paid staff who run them (i.e. held during daytime hours – not evenings or weekends to suit those heart patients who have to return to work). Returning to a sedentary job does mean you have to (as you did) consciously focus on moving more, lunchtime walks, etc. but I think being at home all day can have its own risks of lying around and not exercising, too. And your point about arthritis is so important: sometimes, the more aches and pains we feel, the less we’ll want to move, but the less we move, the worse those aches and pains become. A vicious circle…

      Enjoy your final week at work!

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  4. Pingback: Journeying Beyond Breast Cancer

  5. I’d like to comment on the difficulty of negotiating disability with an “invisible” illness. I had eased off my previous career because I was emotionally unable to handle the stress, learning only much later that my suffering had been largely due to bipolar illness. I already knew I had PTSD.

    When I was no longer able to perform my “step down” desk job because of arthritis in my lower back which caused a pinched nerve, it was devastating. That diagnosis quickly became seen as “lower back pain,” which is taken seriously by absolutely no one.

    Medicare stopped covering my most effective pain medication only in cases of lower back pain, in spite of good studies supporting its use. When I finally applied for disability, it was granted on the basis of chronic mental illness.

    My point is that these illnesses are quite invisible to just about everyone, and my limitations are not taken seriously by just about anyone. Thank goodness I was able to move to an area offering excellent care and understanding medical professionals!

    I read this blog because my parents both died of heart-related illnesses. My mother died too young of congestive heart failure after being told for years that her chest pain was pleurisy, including in the ER the night before she died. I’ve felt the need to educate myself on what I need to know if a heart-related emergency strikes me. I’ve been learning about atypical presentations in women and feel very supported by this blog and the women who take the time to respond to each post.

    Thank you all very much.

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    1. You’ve brought up some really good points, Pat. So glad you’ve found a good medical team now. After my heart attack, I had to miss several weeks of my regular Toastmasters Club meetings; when I finally showed up again one day, one of my (more unenlightened) fellow club members looked me over (apparently looking and sounding just as I’d looked and sounded before my invisible illness diagnosis, before he asked me flat out: “So Carolyn, this is REAL then? Not just like, you know, stress leave?” Aarrrrrggh!

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  6. I too worked for one of those “work like your hair is on fire” organizations (though not in PR.) I’d worked for that organization for many years, and had loved my job — but things began to change about five or six years ago.

    The workload and the demands increased every year. By my last year there, I was working 65 hour weeks — we all were. If management wanted you to stay for an evening meeting, after working all day, or come in for a Saturday meeting — you just did it. My attitude, when I was younger and healthier, was, “Bring it on! Make any demand of me — I can do it!” By the last year, I was feeling tired, stressed and resentful. I felt like I no longer had a life; I just worked all the time. And then I had my heart attack.

    My cardiologist thought I should return to work after a month, and I wanted to. Of course I did, I was a workaholic. Returning to my work-work-work schedule meant that life was back to normal, that I hadn’t really had a heart attack, that I was the same tough, hard-working person that I always had been.

    Except that I wasn’t. It was way too soon to return to work. I was exhausted, unable to work at the pace I had before. I made stupid mistakes. I just could not do the same quality of work that I had done previously. I just couldn’t. I was out sick a lot, so tired that I couldn’t get out of bed some mornings.

    I was old enough and had enough time in to qualify for early retirement, so I did. I would have gotten a great pension if I could have worked five more years….but I just could not work five more years. I don’t think I would have survived. Either I’d have had a second heart attack, or I’d have gotten fired.

    So, I’m retired. The pension is much smaller than I’d have gotten otherwise, but I’m living simply and working part time. I sometimes ask myself if early retirement was really the right decision. If I had taken a longer medical leave when I had the heart attack, would I have recovered better and then been able to return to my old job and work until I could get my full pension? Or was that job just so toxic that I am better off out of it?

    I was certainly not the only person in my former workplace who was stressed. Many of my former colleagues openly admit to taking medication for anxiety and depression. Some have stress-related illnesses like ulcers, colitis, asthma, angina and migraines. People also reported conflicts with resentful husbands, wives, and children who’d say things like, “You’re always working — even when you’re home, you’re doing paperwork or making phone calls. Your job is more important than us!”

    You ask, “Why won’t doctors encourage us to take off the time that we need to heal?” It’s a good question, but another piece of the problem is how toxic so many workplaces are. Employers don’t give a damn if they burn good workers out. If you die, or get too sick to work, they’re happy. They can just replace you with someone younger who will work for less.

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    1. Hi Lynn – thanks so much for sharing your compelling perspective. You’re describing a workplace environment that is disturbingly common. Reminds me of the old business truism about workload: “If you can balance three spinning plates on sticks, you’re rewarded with a fourth, then a fifth.” I live in a capital city with thousands of government employees; it’s common in some offices that when a staff member leave/retire/quit, that position isn’t filled. Instead, the workload is just divided two or three ways between existing employees (whose own workloads are already too big!) And if one of those people leaves, that new workload is just added on to somebody else’s, too. It’s a soul-sucking way to go through your work life. Your early retirement likely saved your sanity, and possibly your life.

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      1. Hi Lynn, I too think that you made the right decision to retire early. I am hoping that you still feel up to it to enjoy your retirement years. You may have to live simply and take less/smaller trips but your quality of life would be worth it. Waking up in the morning and not having to face a mountain of stress will certainly help heal your body. If you had stayed, it sounds like you would have been on the fast track to a heart attack. Take one day at a time and try to enjoy each day. Have a blessed day.

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  7. I am so sorry to hear that women who have suffered heart attacks are treated this way. I wonder if it would be the same for men? I have been suffering with all the symptoms of MVD for the past year. I have been to two cardiologists, one from Wake Med and one from Duke University, here in NC. Both are afraid to diagnose me with MVD. The doctor from Duke and his nurse, never heard the term Cardiac X Syndrome and after my first visit to this doctor, he actually stated that he learned something from me. Scary, to say the least!

    My symptoms have progressed to the point where I get angina and short of breath not only during exertion but also when doing my work as a gemologist/appraiser at my desk. I can hardly talk on the phone anymore without getting chest pain. I am having to stop working after growing my business for the past 15 years. I can hardly concentrate anymore. The doctor from Duke told me to eat plant based foods and go the gym and lift weights. He would not give me a handicap placard for my car because he wanted me to walk, which I try to do daily. He was NO help at all basically has just ignored my symptoms. I explained that my father and all his seven aunts and uncles ALL died from heart disease but that did not seem to mean anything to him. I am 65 years old now, the age when my three aunts (all sisters) died from heart attack or strokes. It just falls on deaf ears.

    Due to my own research, I found a doctor at Emory University that is an expert in MVD. I have an appointment with him next month and am looking forward to a proper diagnosis and medical help. Right now, I feel like I am trying to keep my head above water without going down. Women should not have to experience such cold and uncaring behavior.

    Sorry to go on but I am glad I can vent to women who are experiencing this same illness and who care. Any comments are appreciated.

    Blessings,
    Lois Bouchard

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    1. Hello Lois – I sure hope your Emory doc can help you with an appropriate diagnosis! (Are you seeing Dr. Habib Samady at Emory, by the way? He treated my friend, Joan – you can watch a video of the two of them here – scroll down to the list of links at the end). Your doctor’s comment about Syndrome X reminded me of one of my other readers who told me her own cardiologist had said “I don’t believe in coronary microvascular disease!” (as if he was talking about Santa Claus or the Easter Bunny…)

      Best of luck to you…

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      1. Hi Carolyn,
        Thank you so much for taking the time to respond to my post. I want to thank you for starting this website and taking the time to post all this wonderful information about heart disease and women. It feels so good to know that there is a support group of women out there who care about each other. When I read your comments about how you feel on a daily basis, I felt as if I was reading about myself. Especially, the part about wondering if you will wake up in the morning and pacing yourself every day.

        I did view the video with Joan and Dr. Samady and wanted to get an appointment with him. However, I wrote to Dr. George Sopko up in Bethesda, who is a director at the NIH. I believe he was involved with the WISE research. He was very kind and referred me to a Dr. Arshed Quyyumi at Emory. His background looks very impressive. He is a research scientist and sees patients only one day a week. I just pray that he can help me.

        I apologize if I am writing these comments under the wrong subject title but just started on your blog yesterday. Thank you again for all the work you are doing to support women with heart disease.
        Enjoy your day.
        Lois

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          1. Hi Carolyn thank you so much for site, I really appreciate there is something for women and we can tell our side of stories and get the support we so desperately need.

            This is my story – I was diagnosed 5 years ago with mild MVP. I was put on a beta blocker, ever since my health has not be good but not once did I think it could be my meds, maybe it was not, I am not sure, but to cut a long story short about 3 months ago I was getting constant chest pains to the point of fainting. I rushed myself to the ER only to be told nothing was wrong with me. Again 3 weeks later I was rushed to the ER, did all the test and again was told nothing is wrong as it could be MVP. I was at my wits end, not knowing what to do, my whole life came to a stand still. I could not focus on anything due to the constant chest pains, even my poor family could do nothing but leave me alone.

            I went to my doctor and asked him to please do an angiogram just to rule out anything serious for my peace of mind. He finally agreed. Last week Tuesday I went for the angiogram and on Friday I got my result which has me so worried and I am not sure how serious it is but from what I read on the internet it sounds quite serious below are my results……………… .(Coronary angiography was done using a 6 french system and both left and right coronary arteries were checked. Right coronary artery showed evidence of spasm but no obstructions. Injections into left coronary system also showed spasm of the LAD there was however 30% stenosis of the proximal LAD this was not significant but is the beginning of early disease. Concur, and use of sublingual nitrates and a low dose of aspirin and statins should be used .)

            My doctor seems more concerned about me taking my statin tablets than the actual spasm. So sorry for such a long post my humble apologies for ranting like this, your feedback from you and the group will be highly appreciated. By the way I am 44 years old from South Africa.

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            1. Hello Leena, I’m not a physician so cannot comment on the specifics of your angio report. I can tell you generally that reports like this can indeed seem scary unless you understand what they mean, line by line. For example, we know that a 30% blocked artery is unlikely to cause any cardiac symptoms, and no treatment would likely be recommended unless the blockage was in the neighbourhood of 50-70%. Mitral valve prolapse (MVP) can possibly cause some of the symptoms, but your physician is the one to confirm that for you.

              Please make an appointment as soon as possible with your doctor (not because I think there’s anything urgent in your angio report, but because it’s clear that you do need a professional to review your results with you so that you’re not so worried, and more importantly, to answer any questions you have). If you’re still experiencing symptoms, start keeping a symptom journal (date, time of day, description of symptom, what you were doing/feeling/eating/drinking in the hours leading up to the symptom – this could be helpful for your physician to see in suggesting a further treatment plan for you).

              In my opinion, no patient should get an important medical report out of the blue without an accompanying clear explanation of what the heck it all means. Meanwhile, I hope you are using your nitro for chest pain to see if that is helping your symptoms. I’ve also written about spasm issues (here and here for example). If you need help translating complex cardiology terms, visit my patient-friendly, jargon-free glossary. Best of luck to you…

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  8. When you’re a research physicist, and can no longer even pretend to stay awake in meetings (nor actually get any work done), you don’t have many choices. I went through all that 27 years before I needed stents. Believe me, all people who suddenly find themselves disabled want is for it to go away and let them get back to work – at the job they spent ages preparing for.

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  9. I am a physician, and I take my job very seriously. After my emergent quadruple bypass, I went to my return-to-work evaluation with the hospital’s employee health physician. I suggested that I have backup during call for a time, in case I was not able to perform my duties well, especially in the face of call fatigue. I also suggested returning in a part time capacity for a week, then going up to full time if I felt able.

    The employee health physician told me that if I didn’t return to work full time that I would become psychologically disabled and be unable to work due to inappropriate anxiety and fear. I had to strongly advocate for the backup, and they agreed to do it for one week only.

    In the medical world, there is huge “iron man” culture, where to admit any need is seen as weak and the physician as second class. I strongly feel that patients can be put at risk if physicians feel compelled to work, even when impaired.

    By the way, there was no plan for reintroducing physicians into the workplace after serious medical illness or surgery. I had to invent one. And combat prejudice the whole way.

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    1. Hello Dr. Anne – your experience in that “iron man” culture was so wrong on so many levels! Not only for your own health and recuperation as a patient, but also for the safety of the patients you were treating. I wouldn’t want any physician to be making important decisions about my care if that doc were impaired (by illness, injury, fatigue, whatever). I’d like to think that things have since improved when it comes to realistically accommodating a physician’s fitness to work – but I wonder…?

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  10. Thank you for posting this, Carolyn. After my “widow maker” attack, my doctor’s “get right back on the saddle” approach stunned me at first but helped me heal psychologically. It was the best recommendation I could have received after my procedure and an important dialogue to have with your physician.

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