3 ways to deal with serious illness and engage the health care system

I am deeply conflicted about how we as a society have come to use physicians, medical science and advanced technology in our lives.

Everything has its place in life, but we have given modern medicine with its focus on the chemistry and physics of illness too prominent of a place.  We’ve forgotten that we are not treating diseases; we are helping people with diseases.

Many readers, especially those with lifestyle diseases, can be well and avoid care altogether if they choose too.  But I know that some of you have serious non-lifestyle conditions, for example cancer or lupus.  You may have to rely on medical care, perhaps a lot of it.  I want you to be empowered to manage your own care.  You can do it.

Allow me to make three fundamental suggestions to you in dealing with a serious illness and engaging the healthcare system.

Be in charge

Somehow we have developed the idea that physicians know best, that medicine is too complicated for us to understand, that we must trust the judgment of the experts.  Perhaps we’ve been complicit in this because it’s emotionally easier not to bear responsibility for our own decision making.  These ideas just aren’t true.

Your doctor may be an expert on your particular diagnosis and certain treatments, but he or she cannot be an expert on you. Only you really know yourself — your hopes, fears, and goals; how treatment affects you; how to balance the objective risks and benefits based on your values. The doctor cannot know these things. Neither can your partner, your children or your friends.

Complex subjects can be explained in simple terms.  You don’t have to learn all the details, but you should be able to understand the basics.

How exactly might this treatment benefit me?  How might it hurt me?  What other alternatives are available?  What if I do nothing?  Find a doctor, nurse or other medical professional that can explain it simply for you.  They’re out there.

Even assuming your physician is an expert; realize that he doesn’t know everything.  Most doctors in America have been educated and trained in the western tradition of medicine.

How much does you doctor know that comes from other traditions?  Possibly very little.  Yet your best answers may come from traditions outside of western medicine.  Will your physician be able to help you find them?  Most likely not.

It’s okay to take your time.  Most medical issues are not emergencies.  Get more opinions if you need them.  Look at “alternative medicine.”  Could a lifestyle change make a difference?  What’s best for me?  Weigh all of the options and decide for yourself.

Give yourself a break

It’s hard to be sick or to be dealing with medical problems.  It’s even harder if you must be responsible for determining your own course of therapy, and I’ve just suggested that you do. Being responsible for your care does not mean beating yourself up for your present condition, and it is stressful.  So encourage yourself a little.

I believe most people are way too hard on themselves about all sorts of health issues.  Self-critical thinking is common, especially with the “lifestyle diseases.”  “I am weak.  I have no willpower.  I’m a failure.”

With other illnesses people might think, “I should be better than I am. I’m different.  I’m really not handling this very well.  Why can’t I be upbeat like everyone else? ” In reality you probably aren’t much different than everyone else.

No one has it all together. You just don’t know about others’ problems and feelings.  I’ve heard this described as, “We compare our insides to other people’s outsides.” Very true.  And universal.

Medical professionals are no exception.  The same physicians, who so confidently advise patients on their best options, don’t do any better when roles are reversed and they’re the patients.

They get just as confused, depressed and demoralized as any­one else.  And they have just as much trouble making decisions.  I have read many essays by doctors facing serious illness and this is a universal theme.

Pretty much all of us are just doing the best we can in life, day by day.  You are too. It’s okay to have problems and it’s okay not to be dealing with it very well. Tell yourself that.  Accept yourself as you are.  Then just focus on the next step.  What is it I choose to do now?

Ask for help

If you’re going to be responsible for your care you probably could use some help.  Most of us could, but we never ask.  Why is that?  More unhelpful thinking — “I could never ask for help.  I’d be too embarrassed.  I don’t want to be a burden.  No one really wants to help but they would feel obligated.”  Actually people do want to help.

Prove it to yourself by imagining the reverse situation.  Imagine that a partner, child, friend or neighbor needed your help but was afraid to ask.  You want to help, don’t you?  You wish they would ask?  Perhaps you even offer first because you sense they won’t ask.  Yes, I believe you would.

Now remember that you’re not that different from most people.  They want to help too.  If only you would ask.

What should you ask for?  It’s up to you, but I’d ask for all the help I could get.  Help understanding my treatment options.  Help changing my lifestyle.  Help managing my emotions.  Help with tasks and activities where required.  You will find that all of life gets easier when you can ask for assistance.

These are the concepts cut both ways.  I’ve expressed them from the patient point of view, but they have implications for providers and caregivers too.  As a provider, family member or friend, understand that you can’t know what’s best for another person.  Don’t try don’t try to control their treatment.  They must own their choices.

Know too that they may have many intense feelings that they have not shared with you or anyone.  Allow them to share if they are willing, but don’t expect it all to be revealed.  A good rule would be to assume that they’re hurting more than you know.  Encourage and support them.

Lastly, assume that they need help and are afraid to ask.  You can ask, but you might consider not asking and just offering assistance up front.

In closing, let me confess that I’m not perfect at following my own advice, but I’m working on it.

Peter J. Weiss is an internal medicine physician and former health plan CEO.  He is author of More Health Less Care and can be reached at More Health, Less Care: Building America’s Wellness System.

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