I have had a recent huge influx of interest in my previous post “weird things people say to parents of children with cystic fibrosis ” that you can see here due to a very kind lady Sally Smith on twitter (who is the Social Media Account Manager & volunteer Media/Communication Officer for Cystic Fibrosis Trust.) reposting my blog content- thanks so much Sally for enabling my blog to reach lots of other people in the CF community that I previously had not been able to reach! She has also posted it on facebook but as I do not have a facebook account I’ve not seen the repost- but again thanks very much!
I have had several interesting comments from other parents of children with CF and Cf sufferers which you can see at the bottom of the post. If you have any weird things people have said to you as a parent of a Cystic fibrosis sufferer or as a person with cystic Fibrosis please feel free to join in the discussion!
One reader has asked me a very interesting question in the comments which I thought I would answer with this blog post-
“I’m a researcher who strives to find cures for diseases such as CF, & I pray for more awareness for this disease as well as a cure! On another note, what are some of the things people have said that you’ve found comforting/appropriate?”
If anyone out there has anything to add please feel free to comment below- all the opinions I post are of course my own and other parents of children with Cystic Fibrosis may not agree with what I think is appropriate!
- Ask questions I find that I respond well to people who ask questions and listen to the responses with interest, rather than to people who make bold statements or say meaningless platitudes. As with all things in life, if someone shows a genuine interest and willingness to learn about your experience without judgement then that is the best response.
- Admit your naivety it’s much better to me if a person admits straight way that they know little about the condition and would like to learn more, rather than pretending they know all about it or spouting off snippets of information they picked up from their friend’s, uncle’s dog twenty years ago. There’s no shame in not knowing what Cystic Fibrosis is- I myself had very little idea what it was until my son was diagnosed and I’m still learning things every single day.
- Allow us to be vulnerable and upset This was a big one for me, but is a bit difficult to understand. As a parent of someone with a disability all you do is be strong day in day out. All you do in order to survive is try and ignore the things that could happen, you give your baby 30 meds a day with a smile, you cheerfully explain why you’re hitting them repetitively on the back during physio as your child wriggles and cries to get away and you smile and nod when someone else says “they look so well!”. When we found out about my son’s CF and ever since his diagnosis really, I have got a lot of well meaning, well intentioned platitudes like “well, there’s so much medical advancement now, in a few years there will be a cure” or “He’ll have a normal life! people are living into their forties now!” or “Don’t think about what could happen (fill in blank- lung transplants, tube feeding, diabetes, life expectancy) it might not happen!” all to distract me from this information I had received and also I suppose to protect themselves from my emotions. People did not know what to do with my pain and confusion and sadness so they brushed it off, or tried to distract me. I was desperate after a while for someone to just sit down with me and cry. Someone to say, you know what this is really shitty. Someone who just lets you get all the frustration and sadness out without trying to stop it or change it or dumb it down. We all need that sometimes- we need to be allowed to feel sad-even if its only for 5 minutes before we paste back on our happy smile and get on with the business of being optimistic for the unknown, scary future of our child.
- Share your story I know this is difficult to do face to face due to cross contamination etc, but I think an online community is such a valuable resource and if you are a CF sufferer and have a positive story, or a story of strength or hope or happiness than share it! even if its a sad story then share it and let people know because it raises awareness of the condition. I know every person with CF suffers in a different way as there are so many strains of the disease, but when I hear off of people who are sixty and going strong with CF, or of people like Tim Wotton who share the ups and downs of CF with a positive attitude without playing down the difficulties of the condition, that gives me hope! Hope for the future of my son! Someone Joe can look up to, and when I hear a sad story it lets me know we are not alone and it’s okay to be sad sometimes.
I hope that was an appropriate response to the question Ally! Again if you have any other ideas or a different opinion altogether please let me know in the comments section!
Thanks to everyone who’s reading our blog!