Speaking truth to family and friends

So, for me, there is a clear distinction between sharing every nuance of a chronic disease and sharing what family and friends need to know to be part of my support team.  There is a difference and it is not necessarily what only YOU need, but a combination of both what you and they need, and what will work best for everyone involved in the management of your RA.

How much about RA do you share with your loved ones?

A few examples will help illustrate my point but first let me explain a term I use. When I say care team I am referring to a broad group of folks that includes family, friends, work colleagues, medical people, etc.  It is just a nice shorthand way to reference a large group.  So back to my example. There are times when what I share with my full care team is exactly the same, no changes, no adjustments.  A good example of that is when I am offering a decision I have made around treatment options.  I will cover the same process of deciding with anyone who is involved in the outcome of that decision so I do not mince words about what that decision is, how I arrived at it, and how it may impact my day to day life.

How much to share about RA depends on the audience

On the other hand, when I am flaring, how and what I share with my family and friends in often quite different than what I share with my medical team. I will provide great detail to my medical team as that informs the decision as to how best to treat it.  But, family and friends are actually more concerned with how I am coping and dealing with the flare and how can they help so clinical detail is not only unnecessary, it just muddies the water and makes their response that much more tough to determine.  I have made the mistake of offering excruciating detail to family and more times than not, this just adds confusion and concern to the detriment of my overall needs.  Instead of simply offering comfort and assistance, they now begin to offer clinical advice.

So, the crucial point here is that truth may be truth, but it is nuanced in its detail, influencing how much to share often dependent on the audience and that is really the decision that needs to be made.

That said, there are times when consultation of crucial information from your full care team is warranted and useful, especially when big changes are being considered.  The longer you are managing RA, the more familiar your entire care team will be with your individual situation so that will help to guide your choices about how much, how often and how fully to share.

Another consideration is how will the sharing impact your family and friends?  Will the level of sharing serve both of you or only you?  That is a question that is wise to consider.  Sometimes, serving only you is just fine, by the way.  If I am in really bad shape, I simply need my family and friends to understand the extent, the reality and the impact so I let loose with my sharing and it helps me lot!  On the other hand, if sharing with them at some point in time, will make them feel guilt, inability to change the outcome, frustration, etc. I step back and really consider whether it is wise to share.

Finally who to share with can be a nice sorting strategy.  For example, there are things I share only with my RA Support Group fellow members because they understand so completely what I am going through they are the perfect sounding board.

In the end, developing strategies for sharing your truth about RA will serve you well and only enhance your overall management of RA.


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