May is Brain Cancer Awareness Month.  It is a time to share and promote awareness to those who aren’t walking this world daily.  As a fighting or bereaved family sometimes it can be hard to navigate what to share and what not to share to help with awareness. We wanted to take a moment at the start of this month to share some tips we have on navigating advocacy and privacy.

Ask your Child

If the person in your life is old enough to make decisions about their own privacy, ask them what they are comfortable with you sharing and what to keep private. Even young children can have an input on this.  Respect their wishes for privacy on things and their views on what they want to share of their story.  If the patient is over the age of 18 never share anything about their health journey without their permission, even if they share it on social media they may not want it reshared all over so always ask.

Guardian Rights

If you are not the fighter or angel’s legal guardian ask their permission first before sharing anything on social media.  This includes if the child has passed away and you previously had permission.  Your child’s story and image may be all you have left and you are allowed to guard what you have left however you want. If someone says no or puts limits on things respect their wishes and don’t make them feel bad about it. Trust me- they are agonizing over every decision they make.

View Long Term

We all wish to be that miracle that survives. When sharing your child’s journey try keeping this in mind- Would my child be ok with seeing this info on an internet search later in life? If not then probably isn’t a good idea to share it.

Legal Protection

Unfortunately, we live in a world where identity protection is always an important factor to consider. Before posting, think about these questions:

1. Does this photo show any personal medical info such as insurance number, patient number, full legal name, etc.?
2. Is there any information in this that could be used to steal my child’s (or my) identity?
3. Does any of this information give out personal banking information?
4. Would this violate any privacy or other laws?

We live in a world of oversharing which sometimes means people believe they have a right to know everything.  Remember this is the patient’s story and they should tell it how they want, when they want and limit that when desired.

Remember as well that the best way to advocate is to share personal experiences but you don’t have to be an open book. Advocacy can bring change and hopefully one day a cure.

Until next time- hug your kid and those you love a bit more today and Mary- love you, miss you, mean it.