Social Media Support: 7 Ways to Respond Effectively, and Why Our Responses Matter

Retinoblastoma presents in different ways and combinations (unilateral, bilateral, intraocular, extraocular, trilateral; non-heritable, familial, new heritable mutation, mosaic, one child or more…).  A wide range of treatments are used depending on the size, number and location or tumours, whether one or both eyes are affected, and risk to the child’s life.  Diverse knowledge allows us to better understand and support families whose experiences differ from our own.

WE C Hope provides an extensive Retinoblastoma Resource explaining the different types of retinoblastoma, its treatments, their side effects and risks.  Please take time to learn about the range of possible diagnosis and treatment experiences, especially those that differ from your own.  Please consider sharing the Rb Resource or specific pages with families who seek information about diagnosis, treatments, genetics or other aspects of retinoblastoma.

There is a fine line between opinion and experience, but it’s an important one to understand to provide great support in our online retinoblastoma community.

Opinion is an individual’s perspective about something or someone. It is a personal belief, view, idea, feeling or judgement.  An opinion may be reached based on fact, logic, misinformation, assumption, other related opinions, personal experience, fears, emotions, judgements, and mind-set, or a combination of these.  Opinion is very subjective and may be right or wrong.

Experience is the process of acquiring knowledge or skill from doing, seeing or feeling things. Experience itself is neither good nor bad; it is interpreted by the individual according to their personal mind-set.  An experience may or may not have been the right one for the situation, but it is always factual and can only be shared by the people who have lived it.

This is how opinions and experiences can play out on social media:

Opinion: “Do X treatment, It saved our kid’s life and sight. Avoid eye removal if you can.”

Experience: “Our child was diagnosed with X stage of Rb and we did Y treatment.  We had Z experience with it and we had X outcome. She is Y today.”

Here, the responder’s opinion makes a potentially very dangerous assumption that the child’s life is not at risk, and an incorrect statement about saving life – if tumour is contained in the eye, making eye-salvage possible, life is NOT at risk.  Parents hear what they want to hear – this response may be enough to convince the family to ignore medical advice to enucleate. The child may die as a result – especially if the responder has not identified where the family lives, and possible issues of access to care.

In contrast, the experience presents a particular treatment through the respondent’s personal story. They include the stage of diagnosis so the enquiring parent can put the story in context and compare it to their own child’s situation.  They give details of their treatment experience and the outcome, and end with encouragement.  That gives the enquiring parent much more information, hope and space to ask more questions if they wish.

Opinion: “You must go to X center, Y is the best doctor.”

Experience: “We had all our care at X center and found Y to be an excellent doctor because Z…”

Here, a particular hospital and doctor is named in both responses.  However, the opinion gives no reasoning. There are many excellent hospitals treating retinoblastoma, and X centre may not be appropriate or accessible to the enquirer.  In contrast, the experience provides information in a friendlier tone.

Before publishing, consider whether your comment is an opinion or experience.  Do you need to edit to ensure your personal experience is relevant to the conversation, to maximise its value to the individual?

Share your experience to help others understand what they can expect and what their options may be.  Your insight through living with retinoblastoma will complement the information and recommendations given by the child’s doctors.

Save opinions for potent discussion about specific topics on retinoblastoma care.  Join and start conversations on the WE C Hope Facebook Group and other forums specifically to debate the topics important to you.  Together, we can learn from one another, and the medical and research community can learn from us.

Few families or survivors give all pertinent information when asking a question or requesting support.  They may not think to include it, may be uncomfortable about disclosing it, or may not realise the relevance to their query.  Or they may deliberately withhold certain information, already knowing or suspecting the answer, while hoping for a different response.

Before you make suggestions, find out where the family lives and what they are really looking for.  Ask questions to gather information. Take time to understand the situation more clearly so you can discern the best response.

Parents and survivors the world over experience the same emotional reactions to retinoblastoma and are desperate to connect with others for support.  A statement like ”please help” or “I need advice” often means “my heart is broken, I’m very scared and I need your love, reassurance and encouragement” – but it’s hard to share that emotional need with strangers on a social platform.  We feel less vulnerable when we wrap the request for support in an appeal for information or advice, or a vague plea for help.

Compassion and encouragement may be what that new parent or survivor truly seeks.  To know that others witness their pain, understand it, and stand in solidarity with them. To know they are not alone.

Invest time in real conversation to get to know the individual, so you can provide valuable information, advice and compassionate support that is specific to their situation and needs.  If you don’t have relevant information to offer, but you want to help, tell them you are thinking of them and send your love and prayers.  It’s perfectly OK to not give information, and simply BE with that person in their experience.  Words of genuine care are hugely powerful in dark times – human solidarity helps keep the candle of hope alight.