This Wednesday: Seventeen tips for coping with a medical catastrophe.

Every Wednesday is Tip Day.
This Wednesday: Seventeen tips for coping with a medical catastrophe.

One of the things I’ve done for my Happiness Project is to read a lot of memoirs of catastrophe. Catastrophe takes many forms, but many of these memoirs involved medical crises.

Mercifully, I haven’t myself had an experience with a medical catastrophe. And believe me, I'm very grateful for that. As I was reading, I made notes on the writers’ advice about how to cope with one. It seems reductive to sum up these profound experiences in a tips list, but the writers themselves seemed eager to try to help others learn from what they went through.

Because, unfortunately, although these memoirs are packed with accounts of doctors, nurses, and others who were wonderful, they’re also crammed with stories about devastating problems and hideous frustration with doctors, nurses, and hospitals.

I took the following lessons:

1. Don’t go alone to a stressful doctor’s visit. You can’t listen well when you’re processing difficult information. You need support and another set of ears.

2. Bring a list of questions, take notes, and write everything down. Ask how to spell unfamiliar words – you’ll want to look them up or discuss with other people.

3. Or even use a tape-recorder.

4. Don’t feel like you have to make a decision on the spot. It’s very rare that action has to be immediate. Take the time to absorb the facts, learn about your condition, and consult other doctors.

5. Keep a binder in which you record everything you learn, every decision that’s made, everything that’s performed, every result you know.

6. Always bring all that information with you.

7. Remember, it’s okay to ask for a second opinion. You should.

8. It’s surprisingly important to like and respect your doctor. This matters!

9. Ask your doctor if you may contact him or her between visits, and if so, how?

10. Don’t be afraid to ask how many times the doctor has performed a particular procedure.

11. See if you can call ahead and find out if the doctor is running late before you head into an appointment.

12. Double-check everything you possibly can. When my father was in the hospital, his doctor told him not to drink anything, then a nurse urged him to take a pill with water—which would have been disastrous, if he’d done it. A friend who went through chemo had a special notebook where she wrote down her prescriptions, and checked her notes against the chemo bags before she allowed each treatment to proceed.

13. Always ask: Is this procedure, drug, etc. REALLY necessary? Do you really have to have that enema? Are there other, less invasive options? Over and over in the memoirs, I read about actions that weren’t really necessary that led to major pain or complications. Side effects, pain, difficulty of recovery, time in the hospital, risk of infection, possibility of medical mistake – these are real risks. Arthur Frank refused to sign a consent form when his doctor didn’t explain an operation to his satisfaction—and then ended up not having it at all.

14. Try to have someone with you as much as possible. After reading these memoirs, I would try my darndest never to let a family member stay one hour unaccompanied in a hospital.

15. Don’t postpone things—like seeing friends—until you’re “doing better.” You may never do better.

16. Manage pain!

17. This last one strikes me as quite unfair, but people with experience with medical catastrophes say that it does matter: try to be likeable. Gilda Radner, in particular, emphasized it in her absorbing memoir, It's Always Something. Being gregarious and upbeat wins you more attention and care. It doesn’t seem fair that your likeability should matter at a time when you’re in pain and afraid. But it does. So try.

As I said, I’m in the very fortunate position of never having had to deal with a true medical catastrophe myself – either as a patient or as a sidekick. But my turn will come. The phone is going to ring. (Ask not for whom the phone rings, it rings for thee.)

If you have further suggestions about dealing with a medical crisis, it would be great to see them here, for everyone’s benefit.

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Karly at First Ourselves had a great post about how, during a particularly stressful time, she and her husband left a notebook in the bathroom and communicated by leaving notes for each other.

I don't think that would work well for the Big Man and me, but I loved her idea of doing the same thing with children. The Big Girl would be enchanted -- she's in that note-writing stage. And the notebook would be a terrific keepsake.

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Comments

[Kristin]

My grandmother (father's mother) passed away this past weekend. I ache for my mother, because I honestly don't know how long ago she last saw her ex-mother-in-law. They were friendly, but after Grandma started getting sick, she didn't want Mom to come over because she didn't have the energy for company. She wound up, as you said in #15, not getting better, and Mom didn't get to see her through any of that. That's something I'm going to try to remember in the future.

[Joy]

What an incredibly useful post, Gretchen. I'm saving this. I really like #5, but all of them are great. Thanks.

[beth_nc]

Regarding #17 - as one who's lived through a medical catastrophe/with a chronic illness - Yes. It helps to be cheerful and gracious, especially to the nurses. They seem to work so hard. I don't know if being gracious has ever given me better treatment - but doing so sure helps me feel better about myself.

BUT - don't be a pushover either! Raise questions. Ask for what you need.

[Jody Rosen Knower]

In the last several years, I have been through a series of medical crises€both my own and those of very close family members€and I can attest that these are all excellent tips.

Here are 20 more from my own experience, for anyone who may face a long wait in an emergency room or other hospital waiting room:

http://www.knower.org/blog/2007/11/hospital-waiting-rooms-20-survival-tips.html

[Chris at HumanKindMedia]

Having been through a year of breast cancer treatment and its aftermath a couple years ago, I heartily endorse your tips (and wish I'd had them at our fingertips during that time.) In line with your recent post on mindfulness, I would add that Jon Kabat-Zinn's Full Catastrophe Living is a great book for anyone--before, during, or after a stressful life event.

[Gretchen Rubin]

I'm off to check out the 20 additional tips and to order FULL CATASTROPHE LIVING right now. How did I miss it, with that title?

Beth NC makes a great point. Gilda Radner's point was more that: if you're likeable, people will treat you better. But another important point is that if you behave better, you'll feel better about yourself and you'll feel in control of yourself -- very important when you're feeling sick, scared, and helpless. I'm always astonished anew to realize that right behavior, however difficult, always makes me feel happier than giving into my bad temper. That satisfaction is so fleeting. But at the same time, it has to be balanced with an insistence on proper care.

And of course, sometimes I think you probably need to REACT BIG to help show people how serious a problem is. Remember that scene in Terms of Endearment when Shirley MacLaine is demanding pain medication for her daughter? But doing that every day would make the situation worse, not better.

[Dagny Gromer]

I'd add tip 18: Share the Load.
If you are the sidekick, friend, or family member of the ill or injured person enlist as much help from other friends or family. When my mother-in-law was in the last stages of lung cancer lots of family members and friends took turns staying with her and doing nonmedical tasks for her. We called it our tag team. After she passed all the team members felt like they made a difference for her. And no one person or couple had to do it all.

[Felicia Mitchell]

I can't stress the importance of #14 enough, and I would add another: Everybody (no matter how healthy you think you are) needs a medical power of attorney form current and accessible, a durable POA for legal matters, and a living will (that's often part of the medical power of attorney). It's also helpful if you make up a list of all important details (and passwords) for a spouse or friend who may have to help you with not only the medical crisis but also the payment of bills, etc., while you're out or under.

I've helped a number of people through medical crises (including people not capable of speaking and/or thinking for themselves), learning a little more each time about how to act as a surrogate to adapt the list provided above. Some crises don't end, either, so you can end up spending a lot of time helping others navigate the medical system. I'm glad that I've learned, too, that I'm capable of making potentially life-altering decisions for others within seconds of being asked. Being nice (but assertive) in this context also helps.

I might add yet another bit of advice related to "REACT BIG": Admit the medical crisis. ("Claim the pain.") Just last week, I had a minor medical emergency of my own that progressed until I was unable to budge from the floor, which meant that calling for help ("Sweetie, I think I'm sick") and making a transition to car to emergency room to wheelchair to all the rest was not as seamless as it could have been. Now that I am on the other side of pain, life is very serene. If there is a next time, though, I won't wait until I'm prostrate with pain to admit that I have it. And I'll have finished my list of important details and passwords.

[sylrayj]

Manage Pain - that's a tough one, and yet so important. I'm not in a medical catastrophe - fibromyalgia just isn't that acute - but pain really does drain a lot of your reserves, which leaves you less able to handle changes. It might be important to note your personal responses to pain, so that you are aware of your actual pain levels even if you're too preoccupied to feel them - things like excessive sleepiness, impulsive eating, being angrier than usual. Caring for the pain, if possible, can make the rest of things go easier.

[Shannon]

Thanks for this list. I recently went through a medical catastrophe when my son was born with a major heart defect. I would add some advice for the friends and family of the sidekicks, don't feel like you need to stay away. I really appreciated everyone who came to visit, or called,or sent a card. And I was especially touched when it was someone I wasn't normally that close to. Sometimes it really is about the kindness of strangers.

[Deb in IL]

Having been through my husband's three week-long hospital surgeries/stays, I couldn't agree more strongly with never letting a family member stay one hour unaccompanied in a hospital.

Hospital staffing levels caused oversights, misread orders, delayed and disrespectful treatment, along with major stress and suffering. I was stunned and furious; he is now reluctant to seek medical treatment when it may be needed.

[Dr. Nicole Sundene]

Great post!

I am launching my own blog in a few weeks and am looking for various "featured writers" to hi-light...Physical Therapists, Massage Therapists, Personal Trainers, Doctors, Counselors, etc...

I have been following your blogs for several months and have really enjoyed what you are trying to do here. People need this.

If you are interested in being a featured writer with my website it just means that you have to submit ten co-blogs (I can pick them out from your archives if you wish) after each blog I will include your picture, contact information and link back to your website. This will also be included on the featured writers page along with your bio. When you publish your book you will have my full promotional support. The blog will be going officially public in two weeks and launched to the medical community at large in another month.

I would love to have you on board as the offficial "Happiness Expert" at Kitchentablemedicine.com

Stop by my website and let me know if you are interested!

:D Dr. Nicole

[Anneli]

If you are allergic to specific drugs - like penicillin - be sure to dressage everyone in your family to help you to make sure you dont't get anything injected that can possibly kill you even faster than the original catastrophy.

[Ivana Edwards]

Gretchen, you're assuming everyone has health insurance? Should not do that given how many people don't. That's the most critical issue of all. I suggest you get on the side of single payer universal healthcare which is the only way we're going to cover everyone. The insurance companies need to get out of the health care business. They have no business making money from denying coverage-- or making money from sick people in any case.

It's that simple-- and hard. But only in the USA...

[Gabrielle]

For me, the single most important resource for coping with medical disaster is a sense of humor. For a giggle to get you started, http://froghollow.typepad.com/frog_hollow/2007/04/as_promised.html

[Keely H.]

Really good post. I'm glad you addressed this topic.

I have the dubious honor of (knock on wood) enjoying excellent health, but having many family and friends who have chronic illnesses or have succumbed to them. One thing I've noticed time and again with myself and others connected to the medical catastrophe victim is that it's very easy to be there when the initial catastrophe occurs and very hard to be there for the long haul, particularly when you're not the primary caregiver.

My advice: admit to yourself that you're scared (of the illness, of the possibility that they won't recover, of the possibility that you're not doing as much as you should, of a hundred other things that aren't so easy to name). Don't try to suppress or deny that fear because that only gives it more power. It will begin to unconsciously control your actions. Once you have been honest with yourself about it, make a conscious decision that you're going to "feel the fear and do it anyway". Call, visit, send care packages, ask the person if there's anything you can do to help, make this a priority even if the illness lasts for months, years, or indefinitely. Write it in your planner, leave notes to yourself on the fridge, but don't let yourself slide back into a comfortable routine thinking they'll call you if they need you. They're probably scared too and they may not want to be a burden. Often people have a tendency to isolate themselves until they feel safer or until it's a better time. Don't hover if they really do want more space or solitude, but be sure they know that you can be counted on to be there when they want you to be. It's hard to be there for someone when they have a chronic illness, particularly one that may be terminal, but the pain of remembering the moments you weren't there and the time that passed when you didn't call will be worse than any discomfort or awkwardness you might have from stepping up to the plate.

[jennywenny]

Good tips. I wonder if you've read 'a year of magical thinking' by joan dideon. I was surprised to find it a really wonderful book, considering its subject matter.

[anna]

I love your blog but rarely post. I have a friend going through breast cancer. She wants to know as little as possible and puts her faith in her doctors. I had much the same attitude when I was pregnant. So, "being informed" works for some people and gives others too much to think about. Also, are you aware of the "world happiness database?" It rocks and seems like it would be right up your alley {I think I found it through a link you posted a looong time ago}. Love you {and Beth Lisick}.

[wiezy]

Having just survived a year of breast cancer @ the age of 30, I agree with most of your tips and would add a few.

For tip #2 I kept a notebook where I wrote down all my questions (in advance and as they came up) and notes from appointments or had a friend do it. In the back I wrote down all my doctor's names and numbers and addresses, pharmacy numbers, insurance numbers, prescriptions I was taking (I actually kept this as a computerized list because I updated it so often and every doctor asked for it). That way I had it when I had to fill out the same damn form in every doctor's office. In this notebook I also kept a log of all my appointments, procedures, tests with the dates. This was invaluable months later when I reconciled my insurance claim forms and bills.

5) Definitely keep a binder or series of folders and always ask for printouts of the test results. Some categories were, test results, prescriptions, brochures, claims forms, bills, co-pays, disability insurance, etc.

Ask, ask and ask again. This is part of more than one of your tips, but do it. Ask for additional appointments if you are confused. Ask your doctors the same questions, ask about research you have done and things you have heard, ASK about interactions with other medications, ask to speak to others who are going through/have gone through what you or your loved one is going through. Ask and ask again and again until you understand and are satisfied with the answer. No question is too dumb. Ask even if you feel your doctor is trying to end the appointment. If something hurts or makes you uncomfortable--Speak Up.

As for #17--I agree but wouldn't put it this way. I agree with what Gabrielle said--a sense of humor is important. Not all your loved ones will be able to have a sense of humor but surround yourself with those who make you laugh. Approaching a horrible treatment or test with a smile or optimistic attitude improved not only my health outcomes, but my mood. I had to go through it no matter what, might as well make the most of it. (When I was first diagnosed I bought a lot of funny socks--and got them as gifts--so that when I had to have an mri or chemo, I could look at my feet and smile--my favorite pair--cat pirates.)

For #8) I agree, and it is also important that you like the staff in your doctors' offices or at least develop a good relationship with them since you will probably deal with them more often than the doc.

And most importantly, if you are the person going through the crisis--take care of you first, do only what you want to do, indulge, and you don't have to make others feel better only yourself.

[Harriet Cabelly]

This is one subject I can write a book on. I actually tried with a collaborative writer and an agent but it never got accepted. My daughter suffered a medical crisis and was hospitalized for a year; three months in a hospital on a ventilator and nine months in a rehab relearning every bodily and motor function. She is a true miracle, both in the fact that she survived and that she has had a complete recovery, with her life back as before. (There is an addendum to that but not for now.) I offer here three of many suggestions based on my experience.
● Confer with the doctors often. Having knowledge in a situation where you are totally helpless and have no control, gives you something to hold onto. I met with my daughter’s doctors everyday of the 3 month period that she was in the intensive care unit. It quickly became my lifeline in this foreign world of unknowns.
● Find some outlet to help maintain your physical and psychological health. I am a walker. When the doctor offered me anti-anxiety medication, I made a decision to resume my walking regime so as to keep myself strong and help maintain my stress level without the use of meds. (I’m the antithesis of a pill popper.)
● Hold onto even the smallest semblance of normalcy. In a world that’s turned upside down, maintaining some familiar routines helps keep you grounded. And if not for your sake, then for the sake of other family members. Upon the advice of the doctor (this one I listened to), I took my other daughter shopping at the mall, to the movies occasionally and other outings. As hard as it is to do while your child or other family member is critically ill, those brief times of engaging in the normal aspects of life provides a momentary relief and respite from a world which reeks of death.

I started a blog - www.prevailing-Harriet.blogspot.com with this as part of my subject matter. I’m having a struggle getting it going.

[Buffy]

I have been reading your blog for a while now and have made a note of several interesting posts. I thought this one, whilst hardly a happy topic, was an important one. When you are sick it is important to feel you have some control over what is happening and it seems to me that this is what this post is all about.

BTW, in contrast to your number 17, Dr Bernie Siegel found that patients who questioned their doctor and were labelled uncooperative often fared better than the ones who were easier to work with.

[Tay]

I am really enjoying your blog. As a self-employed artist in the middle of breast cancer treatment, the biggest stress is financial and the health insurance issue. Finding resources to help is one of the best ways to deal with the medical crises.

My experience and blogging about it has been a way to reach out to others and gain support. I can honestly say I am a kind of happy I have never been before. My heart has been cracked open with the outpouring of love and positive energy coming from both friends and strangers.

For me, the most important thing is: tell the truth about your life. Only then can you reap the rewards of terrible medical crises.

I am following your project with interest. Check out my blog if you have time.

Thanks again for a great post.

[Nedra]

Jessie Gruman just came out with a book on this subject called "Aftershock: What to do when the doctor gives you - or someone you love - a devastating diagnosis." I haven't read it, but read a review and it sounds like a guide for how to navigate the medical system and take care of yourself simultaneously.

http://www.aftershockbook.com

[sacker]

A great post and equally excellent responses. I have a few more tips to add: Be patient but not too patient, i.e., wait for solid test results and consultations before making a big decision, but don't let the pace of testing/consultations lag...if you are given a test or consultation appointment for a month from now, gently press for one sooner, ask to be called if there's a cancellation, call the office from time to time to remind them you're trying to get in.
Second, spread the word about what you're facing and your interest in talking to people who've "been there": most of the best advice I got when being treated for cancer was from others who had gone through it; they had all the little tips the doctors don't think to mention or just don't know (such as to keep a pillow on your stomach after abdominal surgery, to press on lightly and cushion the pain when you cough or sneeze, etc.). Third, bring cheerful, homey things with you to the hospital (but nothing really valuable such as jewelry); I brought my own pillow and a blue handknit afghan to the hospital that elicited many admiring comments from patients and staff alike...it seems that they as well as I were buoyed by the sight of something beautiful and colorful in that institutional setting. Fourth, if someone asks what they can bring, don't hesitate to say you'd like some fragrant flowers, something I particularly enjoyed in the hospital because not only were they beautiful but they also suppressed the inevitable odors. And finally, I heartily endorse tip #17 about being nice to doctors, nurses, and clerical staff, for both of the reasons mentioned: your fate is in their hands, and it does help to keep yourself calm and cheerful and hopeful...all of which does not mean you should be a doormat: if you need attention, ask for it, nicely...it IS possible to be persistent and nice at the same time. Thanks to all for the good ideas.

[sacker]

A great post and equally excellent responses. I have a few more tips to add: Be patient but not too patient, i.e., wait for solid test results and consultations before making a big decision, but don't let the pace of testing/consultations lag...if you are given a test or consultation appointment for a month from now, gently press for one sooner, ask to be called if there's a cancellation, call the office from time to time to remind them you're trying to get in.
Second, spread the word about what you're facing and your interest in talking to people who've "been there": most of the best advice I got when being treated for cancer was from others who had gone through it; they had all the little tips the doctors don't think to mention or just don't know (such as to keep a pillow on your stomach after abdominal surgery, to press on lightly and cushion the pain when you cough or sneeze, etc.). Third, bring cheerful, homey things with you to the hospital (but nothing really valuable such as jewelry); I brought my own pillow and a blue handknit afghan to the hospital that elicited many admiring comments from patients and staff alike...it seems that they as well as I were buoyed by the sight of something beautiful and colorful in that institutional setting. Fourth, if someone asks what they can bring, don't hesitate to say you'd like some fragrant flowers, something I particularly enjoyed in the hospital because not only were they beautiful but they also suppressed the inevitable odors. And finally, I heartily endorse tip #17 about being nice to doctors, nurses, and clerical staff, for both of the reasons mentioned: your fate is in their hands, and it does help to keep yourself calm and cheerful and hopeful...all of which does not mean you should be a doormat: if you need attention, ask for it, nicely...it IS possible to be persistent and nice at the same time. Thanks to all for the good ideas.