Dr. Peter J. Weiss

Be Empow­ered To Man­age You Own Care

Those of you who are reg­u­lar read­ers of this blog know that 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.

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.

Please share your ideas and com­ments with me by email at pete@​drpeterjweiss.​com. I would enjoy hear­ing from you.