Information Overload

Author: SRF
Date Published: October-2012

When dealing with a chronic illness it can be challenging to make sense of the wave of information available. For most this is a new territory, with its own language, culture and nuances to navigate. It takes time to absorb and understand.

Even though patients are the experts about how they feel, think and react to any given medical situation their illness dictates, they are not doctors. However, patients can learn to bridge the gap and improve the discussion with their medical team. Following are some tips you might find useful to help further your understanding:

Build your knowledge. By the time you start treatment for your diagnosis; you will likely have searched the web and read brochures on your disease. Ask your medical team which sites have reliable and up-to-date information to avoid old and possibly discouraging information on treatment outcomes.

While blogs and support forums help give a real world view of the range of experiences, you are an individual, and too much thinking about what happens to others, good or bad, increases worry further. Consider using these in moderation.

To save time, set up Google Reader for news sites, blogs and forums and use the search function (general terms like morphea, scleroderma or systemic sclerosis) to narrow down articles of interest.

Keep a notepad. At each appointment, take notes. This is new territory, and hard to master. Come with someone, either as a listener or a scribe. A spouse, friend or sibling can help ensure that both parties heard and understood the consequences the same way.

Start a binder. As you go through treatment, you will get more and more paper. For example organize a binder with these categories: contact info (first page), treatment plan, test results, background information and drug information.

The purpose is to have all reference material in one place, to consult and take to hospital and clinic visits.

Be prepared. Prepare a list of questions for the medical team for your clinic check-ups. Doctors are busy people; however, they should always give  time to answer your questions.

As treatment varies depending on the doctor, having detailed notes and questions helps track any changes. Given the group dynamic of some clinics, it’s okay to question your team about changes – not to challenge their judgment but to ensure you understand their rationale for the change.

An empowered patient becomes a partner in treatment, one that any medical team would (or should) appreciate and may result in better care.

Go electronic... and paperless. If you’re an iPad user following are some apps that you might find useful:

Evernote for clinic notes and questions, keeps everything very easy to find

Numbers to track blood counts

Withings to track blood pressure and weight

Documents to Go for Word files such as journaling

While all of us have different ways of managing our care, being organized is one of the few areas in which one can have some control in something beyond one’s control, and strengthen the partnership with one’s medical team. It may not change the outcome, but it will increase one’s confidence in treatment pursued.