Health Care: Info at Diagnosis and Treatment

Many people who’ve received the diagnosis of a serious or life-threatening illness turn first to medical web sites or self-help sites for people with similar diagnoses. And while web resources can be excellent, it can be tough to discern if the info or research is directly applicable to you or is contextualized correctly. 

As wonderful as it is be able to Google a disease or diagnosis or medication and find out a ton of information, an outpouring of web-based info can be overwhelming, even alarming, especially if a person doesn’t have a medical background, (and sometimes if they do). 

As a gateway for initial information or to augment existing information, web-based resources can be invaluable. Some sites, like WebMD or the Mao Clinic sites are written in comprehensible ways and can serve to enhance understanding. 

But be careful: the sheer volume of info on the web can be devastating, especially in the context of a new diagnosis or a worsening health status. And some of the sites can be questionable, with personal or professional bias, factual errors, and emotion-laden opinion. It’s no wonder so many people feel stressed out and anxious after a web-info-binge. 

Many people find it helpful to limit information gathering, at least to some degree, until they have a chance to meet with their physician again, determine an accurate diagnosis and staging, and have at least an initial discussion concerning potential treatment options. That way you’ll be doing an “apples to apples” comparison when you start checking on line. A cancer diagnoses, for example, includes disease staging. 

Looking at survival stats is very different with a Stage IV B type cancer VS a Stage IA. On the other hand, depending on the kind of cancer, a Stage IV might be eminently curable. Finding out this info before doing on-line searches may save significant heartache. 

Before doing a deep dive into web-based resources, it might be a good idea to explore a little more about yourself, your learning style, and past and current experience with attaining and retaining information. Are you the kind of person who needs more information to feel better? Do you think the web is the best way for you to obtain that info? If so, 'have at it.' But be careful: it can be difficult to find the balance between 'just enough' information and 'way too much.' If in doubt, disconnect. Take a break and come back when you’re rested. 

Or are you someone who would prefer limited information dispensed in small doses? Do you prefer the personal approach to attaining information about your health status or is the web a good vehicle for getting the info you need? If so, it may be a good idea to make another appointment with your physician or health care provider. The initial appointment where one receives “bad” news can be a blank: you may need a re-visit to confirm what you heard and ask questions which have arisen in the meantime. 

Perhaps, you, like many people, are combination—a person who likes both internet based info and the personal touch. It might even depend on the day, with a quick internet search in the morning and a mychart or electronic records communication question to your physician in the afternoon. If you decide, as most people do, to sleuth info on your disease process or meds (or that of your loved one on line, try to stick to known web resources.  

Web Resources 

Web Resources with a reputation for accuracy and professionalism include: www.mayoclinic.com; www.webmd.com. WebMD is more commercial, but has some accurate basic info. If you need hard core medical research studies and want to know what is reputable there, check out www.UptoDate.com (which charges for full access to research studies) or for patient and family info or research studies presented in an understandable way, check out the National Institute of Health web site www.nih.gov and use the search engine. National organizations related to your disease process may be helpful too. 

The web, like everything else, has downsides. 

First: Managing conflicting information can be confusing. Know that upfront and prepare for your response.  Any disease process and any medical problem will have variable information posted on the web.  You may see one conclusion in one place on the web and another in another location. Two or four of six or sixty studies on the same medical problem might have just as many different inputs and different conclusions.  You can end up mentally (or physically) throwing up your hands in frustration.  Take it slowly, keep it simple.  Glean the info you can, leave the rest.  Make a list of what you need clarification on. Check in with your provider. 

Second: Keep yourself safe.  Most people know about the dangers of identity theft and the need to be careful when sharing personal or financial info on line. What is less commonly known are the risks of some support groups or chat rooms. Having a serious illness can put you in a vulnerable circumstance. Please be careful.  Not everyone is who they seem to be.  A supervised chat room run by a verifiable organization is a good plan.  

Online communities can be just that, healthy, supportive ways to connect when it’s tough to get out of the house. They have made a huge difference to millions of people. Just be careful. Choose a support group sponsored by a known or trusted national group or entity and be prudent with self-revelation, especially when connected with your actual identity. Try your doctor’s office, treatment facility, or hospital for informational materials on specific kinds of illness, local community resources, and support groups.  

Integrating what you've discovered:  Lastly, after you've collected a plethora of info, some of which, if your not medically trained, will be incomprehensible to you. Stop for a bit.  Take a deep breath, or three, because, at this point your heart is probably racing and you have a pit in your stomach.  You are not, after all, taking a stroll down information lane: You are seeking and finding information about a diagnosis you have or someone you care about has.  This is not clinical research, not for you.  

This is information attaining with the the goal of better understanding what is happening, what will happen, or what might happen. To you.  Or to someone you love.  You are trying to figure out the meaning behind the diagnosis, the truth beyond the physicians abbreviated words in the all-too-short appointment. 

This info-seeking has more emotional heft than your basic every day web surfing. Treat it like that. Limit the time to what you can handle: do not go down internet rabbit hole after internet rabbit hole, until hours have gone by and your eyes are buggy and your mind blown to bits.  Eat this info piecemeal.  And, unlike me, don't plan to drive right after getting tough news via an impersonal electronic connection.  (I once researched a tough diagnosis for a family member and soon after got in the car, and promptly crashed it.  All were well, but a lesson was learned.) 

Figure out how to dilute the stress from information and over-information. If need be, seek medical clarification via a mychart message or follow up appointment with your provider.  You may even choose to have a second opinion, to be sure your treatment plan is one you concur with.  

After imbibing in internet research of a health condition or illness, figure out how to unwind. Take a walk, talk to a loved one, say a prayer. Do something to let yourself refocus your mind and your body on getting through this, on discovering your strength again, on recovering resilience.