When you’re ill do you google your symptoms? I do. I’m a Googler. I Google all the time. I Google the names of actors when I should be enjoying a film, I Google song lyrics and facts about artists while I’m listening to music, parenting queries, fashion advice, historical facts…basically I Google anything and everything. I often wonder what I would do without Google (or indeed other good search engines!). So when I’m feeling under the weather or if one of the kids is ill of course I Google the symptoms that we’re experiencing.
(Hang on a minute while I take a moment to Google “Am I addicted to Googling?”
Oh…”My names Claire and I’m a Googleholic.“)
I actually think Googling symptoms is generally a useful thing. Often it can help you diagnose a minor complaint without the need for a doctor or indeed can encourage you to visit a doctor and get medical help if needed. But if you are googling symptoms and worrying silently then the best medicine for you would be to talk to friends and family. A problem shared is a problem halved. Slater Gordon Lawyers conducted research and found that while 62% of people are likely to search their symptoms online, only 57% of people polled would be willing to talk to friends and families about their health. It would be great to remove stigma and get that figure up to 100% of people happy to talk with friends and family. I also feel that the internet is far more than just a diagnostic tool for people and families with health conditions.
This week I came across a video on Today (no, I didn’t Google it, it appeared on my Facebook feed) of two American families whose children have the same heart condition as my son Danny, Hypoplastic Left Heart Syndrome. I found it interesting that when doctors made the in utero diagnosis they told Marie Dasaro (Hope’s mum) to stay off the internet. Like many heart parents I know, Marie and her fiancee Lou Campanella ignored this advice. Looking online they found Jack Foley, also known as Super Jack, and sent his mother a message on Facebook because “There’s nothing like being in touch with somebody who has actually been through this.”
I could relate completely to this part of the story as when Danny was diagnosed at two days old we felt completely alone. We’d been told that Danny had a very serious heart condition. We were told to name him quickly. Hypoplastic Left Heart Syndrome means that he basically only had half a heart. This condition in incompatible with life. Without treatment, he would die. We were given three options, we could let him die comfortably, wait for a heart transplant (with very little chance of getting a new heart) or opt for a series of at least three major open heart surgeries. We wanted to give our baby a chance so we chose high risk surgery. At three days old he was transferred to Birmingham Children’s Hospital where we were given hope. We were assigned a Cardiac Liasion Nurse to help us and she told us about a charity Little Heart Matters (then called Left Heart Matters) who help families affected by a diagnosis of a single ventricle heart condition. She gave us a folder and told us that they had a website. This was nearly fifteen years ago so long before the days of smartphones and tablets. We spent as much time as allowed by Danny’s side. When it was time for his first operation we had a lot of time to spare and needed to keep busy for about 5-6 hours of the most worrying time. We went out of the hospital and bought Danny baby toys and a balloon as we willed him to be OK. We also popped into the hospital’s parent research room. We fired up a computer and found the basic website for Little Hearts Matter.
We joined their forum, started a thread, wrote our story and then went back to see how Danny was getting on. It was to be days later until we had the chance to go back and check the website again. We had replies to our post. There were other parents in the same and similar situations. Some had older children- oh the hope and joy that gave us- others had recently had babies and some were pregnant with their current HLHS baby. Thanks to the internet we had found our heart family. It’s like a club, a strange club that no one really chooses to be a member, but once you’re in it you’re extremely grateful for the support. In the early days we spent a lot of time online chatting to those other parents. We exchanged emails and telephone numbers. We then met up with them at Little Heart Matters events and still do (in fact we have an open day coming up next weekend). We have met true friends who we might not see or hear from regularly but know would do anything for us in a heart beat (and vice versa).
I cried with happiness as I watched the video showing Hope and Jack’s family meeting together for the first time on Hope’s first birthday. These meetings and friendships are so important. I know I treasure them.
The internet is not only useful for heart families. There are support groups out there for almost every different medical condition (and if you have a rare condition you can use the internet to start your own which may inspire others). In the UK Contact a Family is a great resource to find other families.
The internet can help people with health issues in many ways- socially, finding support, information, fundraising, raising awareness, giving us hope and inspiring us – but only if it’s used in the right way.
Do you search for your symptoms online, prefer to talk to friends and family or prefer to go straight to your GP?
#ImTalkingHealth is a Collaborative Post but all opinions are my own