A guest post from a parent who raises awareness of her child's medical condition.

When I wrote the article (and then blog post) about parents oversharing about their children's disabilities online, I wasn't sure what reaction I was going to get. For the most part, the response has been positive. So many parents have thanked me for writing it. Adults with disabilities have told me about when their photos, stories and illnesses were overshared in their youth. Amd some parents have told me they're changing how they share information online. There have been some harsh reactions too - clearly the post touched a nerve. And parents continue to overshare - the latest was a photo of a child's genitals in a "private" illness Facebook group. I was so angry. Since when is the need for medical treatment an excuse to strip someone of the child's dignity and privacy? Would that parent like their vagina shared on Facebook too?

A couple of bloggers wrote responses to my blog post. Meriah wrote

"We parents need to find a way to share our own stories as parents, and connect with one another while still giving our children the space and wherewithal to tell their own stories the way that they will."

And Alison, who was originally angered by my post wrote:

"But when the initial annoyance wore off, I realised that she had a point.

And it was not her post, but the way she made me feel that pissed me off.

I felt a bit dirty - embarrassed and ashamed.

Like I had made a mistake.

That none of my reasons for writing were about Gabe - but all about me.

Because she is right. Although Gabe can't speak for himself right now (and might never be able to) his story is his and his alone.

Do I have the right to share it for him?

So after a month of not knowing what to write so writing nothing, I am grateful to Carly for making me think more about the child in this blog. About his dignity. The digital identity that I have made for him. I am grateful to her for making me question the reasons behind this blog."

Responses from these parents mean the world to me. They've reassured me my opinion is still valid, despite my lack of motherhood status. Thank you Meriah's and Alison.

Another parent who's resonated with my blog post is (another) Carly, who offered a guest post for my blog. Carly is a pschologist and a mum to a little girl with a genetic condition. She told me she enjoys my writing - finding it humourous and refreshing, and will show her students my blog. She teaches the social construction of disability. Here's her response to my blog. I really like how she covers the challenges of telling our stories to tabloid media.

 

"When she was five months old my little girl (Ellie, now five) was diagnosed with a genetic condition, called neurofibromatosis type 1(NF). Having no experience of genetic conditions and never having heard of neurofibromatosis I asked the consultant when she would be better. The consultant looked at me somewhat confused and then said as gently as she could "she won't be better it's not cureable and its progressive".

I left the hospital that day somewhat overwhealmed by the notion that in order to come to terms with her condition I would first have to understand it. It felt somewhat like rubbing salt in the wound that my baby had been diagnosed with something I couldn’t even pronounced and that I would have to dedicate many hours of study to before I could begin to understand the implications for her future. Amidst my shock and confusion I was comforted by the knowledge that my career as a Health Psychologist would allow me to dedicate my research time to this condition and that I would be able to share any knowledge I gained with others. I left that first consultation promising myself and Ellie that I would commit to raising awareness of NF and to provide support to the NF community.

One of the first tasks I did was to write an article for a British magazine called 'Pick me up' when the article came out I was proud and excited, I felt that I was one step closer to making NF a house hold name, and although I was only paid a modest fee I was happy depositing it in Ellie’s bank account for her future. In the first couple of years since Ellie’s diagnosis I had a few stories written in local papers and even a national at one point, I was praised within the NF community for raising awareness and I truly believed I was. Then one day I taught a class to my students on representations of genetic conditions in print media (I am a lecturer in Psychology at Manchester Metropolitan University) I asked them to read various stories of genetic conditions, and tell me their thoughts but something unexpected happened; the students described the parents as self-serving; trying to evoke sympathy; they questioned the ethics of those parents who had sold their stories without considering what they may have used the money for and worst of all not one student remembered the name of any of the conditions! After being initially defensive I realised that lesson was something of a eureka moment telling Ellie’s story wasn’t raising awareness of NF because the final version of the story was written by the journalist with a different goal in mind.

Recently another mother with the NF community told her story to a national news paper and the headline was so sensationalist that she received a heartbreaking amount of bullying from people telling her she was selfish to have had children. This lady did not in fact "sell" her story she gave it freely, she thought she was doing a favour for a charity by raising awareness to help others. Ultimately it didn’t raise awareness of NF as the information pertaining to NF was inaccurate implying that it is terminal whereas it is actually extremely variable and unpredictable. This poor woman brought unnecessary negative attention towards her family and quite frankly the journalist should be ashamed.

Which brings me to Carly's blog post on "parent bloggers" and how much information we should share about our children, even when the words are our own. This is a topic to which I have given a great deal of thought and have come to the conclusion that my views on this are pretty much the same as my views on parenting as a whole, and you need to ask yourself 1) how does it affect your children now?, 2) how does it potentially affect your children in the future?, and 3) how does it benefit others?. I have read and re read Carly’s blog and I genuinely can’t understand why it was viewed as controversial, personally I think the blog presents an extremely balance view and rather than saying parents shouldn't blog about their children. Carly is simply asking parent bloggers to give consideration to what they say, how they say it and how the reader may interpret it. The latter is the hardest to do of course as we become so immersed in our own narratives that we cannot see alternative views.

Since my ‘genetic conditions’ seminar I have been much more mindful in my awareness raising and have refused many things because I didn't agree with the angle or over concerns of the potential aftermath and whilst I still do press and blogging I give full consideration to every word written and every picture shared. For sharing more specific details to benefit others I still do this within a closed FB group for people affected by NF, in this way there is a direct benefit from our shared experiences. But there are some details I have not. I will not share - they are Ellie’s story not mine, and if she decides to share them in the future that is her choice. I can't deny that I have personally benefitted from blogs where people share much more; have felt less alone when reading about similar experiences and ultimately realised my daughter is disabled though the way those blogs reasonated with me, and for that I am grateful. Thinking of one blog in particular describing two autistic children and judging it by my own criteria, I don’t think this blogger is oversharing. In fact exactly as Carly points to in her blog post I am sure every detail is considered and reconsidered and that many more personal and intimate details are omitted compared to those that are put in.

In closing I would like to say how grateful I am to Carly for inviting me to write this piece and if anyone would like to learn any more about NF1 please visit The Childrens Tumour Foundation."

Would you like to write a guest post for my blog? The guidelines are here.