“Patient” Education

Ever find yourself having to educate your family and friends about your condition and what you need, and don’t need, from them?  Maybe a better question is, how often do you have to educate them?  Every day? 


While you have taken the time to get educated on your condition and how to take good care of yourself, friends and family may not have put in the same effort, or may not know how.  As a result, you may find yourself sometimes getting frustrated over their lack of understanding, the insensitive comments they make, or the times when you need a helping hand that they don’t offer, or the one that they do offer, but that you don’t need. 


And then there is plain old denial.  But even if you have loved ones who just want to pretend that if you don’t think about your condition it will go away, some education, over time, may help them to face up to what you’re facing, and be a better support. 


So what it comes down to is that, on top of everything else you do to maintain your health, being an educator is part of the deal.  And the best way to do that job, as you may already have experienced, is with a whole lot of patience.  In other words, “patient” education. 


Here are few ideas to help you in your efforts: 


Be an example.  You can show who your family members and friends that you are dealing with your condition by doing the best you can to live the best life possible.   Being compliant with your treatment, reaching out for additional help from your treatment team as questions or crises arise, taking the best possible care of yourself.  This may help to reassure them that, while your condition is challenging, you are doing everything you can to manage it.  Actions speak louder than words, as they say. 


Be your authentic self.  This means being the loving, caring person that you are, but also letting them know when you are not at your best, that you are okay but that you may need a little extra support from them, as well as some understanding.  If you are having a bad day, don’t pressure yourself to pretend otherwise.  Be who you are. 


Answer questions.  Encourage your loved ones to ask you questions.  And when they do, answer these questions at their level.  In other words, give them information that you think they can understand and that will also provide enough information that they will have a sense of what you are facing.  You might want to offer answers to the questions that you suspect your loved ones have but are afraid to ask, such as when children wonder whether your condition is hereditary.  If you run into any questions you can’t answer, you might want to check in with your physician, or offer to help your family member do some research. 


Provide reassurance.  Your loved ones may be feeling helpless, wanting to help you and worrying about what your condition may mean in the future.  Remind them that you are doing everything you can to take care of yourself, and that you are all a team.  Again, letting them know how they can help you to help yourself can make a difference in how they experience your condition.


Look for teachable moments.  When an issue arises, address it in the moment rather than saving it up as material for your next lecture.  If a loved one says or does something that shows lack of understanding, or offers to do something that you don’t need them to do, use that moment to gently let them know how you were affected, and what they could do instead. 


Be compassionate.  I am a big believer in compassion, being compassionate toward ourselves and directing that compassion outward toward others.  I think that if you live a compassionate life, you have a firm foundation for weathering the day to day challenges that come your way, and that includes people in your life who just don’t seem to know any better. 


Be optimistic, but don’t expect miracles.  Expecting people to think or feel or behave the way we wish they would is often a losing proposition.  People come around in their own way and in their own time, or, sadly, sometimes not at all. 


And so, at the risk of repeating myself: Take care of yourself.  Gather the people around you who can be supportive, who are willing to understand what’s going on with you, who are willing to be taught and to learn.  There are a lot of them out there.