Monday, October 15, 2012

MiM Mail: Dealing with a chronic illness

Hello MiM blogosphere-

I'm a surgical resident, wife, and mother.  I love planning, writing lists, checking boxes, and emailing my husband with "action items" -- basically, the 21st-century Honey-Do list. 

Despite all of that, I have found myself in a situation that I never planned for. 

Recently, I was diagnosed with a chronic illness.  Without getting too specific, it will impact how I do my job, but won't prevent me from doing it.  Think of something along the lines of Crohn's disease, Type 1 DM, or lupus.  I have to take medication, monitor my symptoms, and go to doctors appointments.  I might have to take a 5 minute break during cases that last more than 6 hours.  But, my doctors and I see no reason why I cannot continue to provide excellent care to patients.  I'm lucky that there is even an attending surgeon at my institution who has the same chronic illness that I do.

All that said, finding out this news has been Really Hard.  It's scary, and overwhelming, and my head is spinning.

I worry about where my disease will take me... What complications are in store?  How will I handle it on those days when I feel really bad?  Why isn't there a cure for this thing, yet?  But, what I'm worrying about most are the practical things...legal protections, financial expenses, keeping insurance, dealing with a chronic illness and surgical residency (a chronic condition in and of itself!).

So, I appeal to you all with three big questions.  Maybe you've been through something like this before?  Or seen someone go through it? 

1.  What and how do I tell my co-residents?  My attendings?  My program is hard and the hours are very long (80 hour workweek, what??), but it's actually not all that malignant.  I know my coresidents and attendings will prioritize my health and giving me 10 minutes of self-care time during a 15-hour workday probably won't be a big deal... But, what I really worry about is the loss of opportunities.  Like, if one of my attendings wants a resident to help with a cool research project, but they don't ask me, reasoning that the extra work will be too burdensome with my illness.  Same thing if a good case comes in late in the evening...what if they don't ask me to stay because of my illness?  Will all the credibility I've built up as a hard-working, excellent resident slowly be eroded by missed opportunities? 

2.  How do I handle this with future employers, when I apply to fellowships and ultimately attending jobs?  Am I obligated to disclose this information?  My field is fairly in-demand (at least right now), and I'm a good resident at an excellent program, but is chronic illness a big enough 'black mark' to mar even an otherwise exemplary CV?  I'm terrified that if I'm not the best-of-the-best--if I'm just average--my illness will make it such that employers pass me over for someone who is totally healthy.

3.  How can my husband and I protect ourselves financially from the risks of my chronic illness?  He works full-time in a well-paying field... though his salary is about half of what my eventual attending salary will be... assuming I don't scale back to a slower-paced practice given my situation.  We always assumed my career would be the primary one... we'd move to follow my job prospects, I'd have the Cadillac disability insurance, he might even eventually work part-time or stay home entirely to focus on parenting.  It seems like all of that is changing, and I'm struggling to figure out how we should reprioritize.

Kind of a heavy post, I know... but I certainly appreciate any insights.

-Claire

11 comments:

  1. I would get in touch with the attending surgeon who has the same chronic illness. His advice will be best, as he's in the same field and deals with the same illness.

    Good luck!

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  2. Claire - thank you for sharing. I find it reassuring that in point 3 you mention that your husband works in a well paying field. Even though it's half of what you could potentially make perhaps both of your careers could be part time? Or maybe you could consider being the part-time worker and your husband remain full time? I know it's not what you originally envisioned but perhaps it could still be rewarding. Sending well wishes!

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  3. Wow I can't believe how close to home this post hit. I was just diagnosed with an auto-immune disease and I am halfway through medical school. My biggest issue is whether to take the medication they want to put me on (biologic agents) knowing the high risk of infection as a side effect while I'm working in the hospital with sick patients every single day. I'm scared of having to drop out of school if there is no other way but to take these drugs. I know our situations are not exactly the same but I understand the impact of such a diagnosis and the bad timing of it all. I also think you should try to talk to the other surgeon and see how he adapted to the situation. I would love to have people in my situation to be able to talk to. Best of luck to you!

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  4. So sorry to hear about the recent diagnosis. I have a good friend from residency who was diagnosed with Crohn's disease during residency. She got to the point where she couldn't work anymore because she was having so much bloody diarrhea and swollen joints. Fast forward to present - she is an attending in her field in academics. No one questions her pulling her weight or doing her job capably. She works just as much as everyone else, although I think it's given her a perspective on work-life balance.

    1. Be honest with your friends. Be honest with the attendings who need to know. Everyone else doesn't need to know.

    2. I wouldn't disclose it to future employers. It's not necessary and your confidentiality is protected under the ADA laws.

    3. Always be employed in a large organization such that you have big group insurance. That will help with the whole pre-existing conditions thing.

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  5. Kelly has given good advice, I agree with her! I'd also say that as this condition is new to you, it takes up a lot of your mind and identity. But as you get used to it and adjust any aspects of your life that need adjusting to accommodate your new normal, it will creep back from being a huge issue to become just one thing about you. Chronic disease does not define those who have it.

    It sounds like you have a solid life plan, a great environment and even a potential colleague/mentor to learn from.

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  6. The only person who NEEDS to know is your program director. It may be helpful to talk to the surgeon who has your condition. S/he may be helpful. Everyone else only needs to know, "Dr. Claire Awesome might require some minor accommodations, these have been cleared through the residency. Please oblige." Everyone doesn't need to know the specifics.

    It isn't your future employers business when you interview either. You will be amazed as an attending, everyone does what they need to do and so many less people are up in your business. If the illness really just requires what you stated above, no need to make a big deal of it. There is no saying the healthiest most productive member of your group won't have to tale time off for am illness. Joining a large group seems very wise.

    As for question #3: See if you are eligible for disability insurance. Occupation specific. Buy it. Then live well below your means. Honestly a surgeon at 50% full time should still make a very livable wage. Make sure your life decisions always factor in, "what if a month from now I cannot work."

    And goodness, if your illness requires immune suppressing tx, think long and hard.

    Good luck!

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  7. I am not a provider but I AM a chronic disease patient (one of these most involved, rare and all system consuming disorders out there - MPS I H/S) and being denied insurance cannot happen right now as long as you keep insur at all points and if the law stands pre-existing conditions will be a thing of the past as far as Insur's being able to deny you.

    Your disorder is just a small part of you, not the whole of you and in time even despite drs appts and (if it requires) treatments you will come to realize it is just a small piece of your life not the defining pieice of your life.

    Erica
    www.rarelydefined.blogspot.com
    rare disease advocacy

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  8. I hope everything works out for you and your family. Please keep us posted with your condition and your program.

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  9. 1. From the perspective of a vet student who was diagnosed with a chronic illness midway through vet school, it doesn't stop people from asking you to volunteer your time on projects. Also, how long have you already been managing this problem? My illness certainly didn't start with diagnosis, and I had already gotten pretty far without knowing how to manage it properly. I also found out that a lot more people than I realized had their own medical problems they were quietly dealing with.

    2. Again, from my own experience, it takes a while to accept having a chronic illness. For a while after diagnosis I found myself practically blurting it out, and then trying to hide it, and basically going back and forth on the proper amount of disclosure. It gets easier as the diagnosis becomes old history, too, and less emotionally loaded. Like Erica J. Thiel says, it's just a small part, not a defining piece of your life.

    3. Keep up your insurance, keep up with regular wellness and self care. Most importantly, understand your personal needs. It may be that what you envisioned for your future won't perfectly match what you end up doing...but that happens to everyone regardless!

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  10. I'm also not a doctor (though I would truly love to work in medicine) but another chronic illness patient. I think you've gotten great advice so far and I am probably not best suited to answer your questions and worries. However, with that said, I really just wanted to point out that in certain light there are actually some benefits to you being a doctor with a chronic illness. In fact I think you have the ability to make a difference and an impact on so many others in a way many other surgeons probably can't. You will have the insight now on how the patients you meet with chronic illnesses feel. You will know what they've been through and how stressful it can be. You will be a better listener, a better doctor even. And this is all precisely because you now know what it's like to be both the patient and the doctor. I'm sure too that being a doctor will help you better manage your disease and communicate with your own doctors but also, think of what I just said- you can use this to be an even better doctor. I'm not sure what kind of surgery you do but with that said, I know I'm actually meeting with surgeon tomorrow morning to discuss a major biopsy that will hopefully be diagnostic in nature. You, having a chronic illness yourself, will be better able should the situation arise and I'm sure in most forms of surgery, it eventually will, to be the one that has to give someone a diagnosis potentially of a chronic disease and you will now know what it feels like to be told that and also better able to help your patients with that early stage of trying to figure out what to do, where to turn, or even in later stages, just be a good support. And these are things that other doctors who have never been on the receiving end of a chronic illness diagnosis will never be as good at, no matter how much training or experience they have. I imagine at least one reason you went into medicine to begin with is that you wanted to make a difference and to help people. It's easy to get really down about chronic illness and really stressed but I hope you will always remember too that you can use this to make even more of a difference and be even more helpful. This can be a positive thing and a big learning experience and something medical school and residency can't teach. Embrace that aspect. And I wish you the best of luck with your illness, your future, your family, your residency, and the rest of your career. You are so strong and you will adjust. There's a lot of unknowns with chronic illness and a lot of fears and worries but it does get better and I'm sure others will only have more respect for you, not less.

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  11. As a young mother starting off in her career, this must be so difficult for you right now. But this illness will make you an amazing doctor. You will be able to understand more about your patients than your healthier colleagues can, and your patients will truly appreciate your insights. The other commentators who told you to keep this to yourself are correct. You don't need to be secretive, just remind yourself that this is really no one else's business.

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