Raising awareness of chronic conditions is vital and social media has hugely increased the reach these messages can have. But recently I’ve noticed a shift in tone in some of these messages that makes me a little uneasy.
To me, awareness raising should be about getting potentially life-changing or even life-saving messages out: information about symptoms, ways to support loved ones with a condition, things to ask your doctor about. Most conditions now have a dedicated awareness-raising day or week which provides a great opportunity to share information with the public. Social media makes it easy to get involved and have your say.
But I want to question what it is each of us shares at these opportunities. We seem to be moving towards using them as an outlet for (often legitimate) frustration that goes something like this: “You are ignorant about my condition, you believe myths and you don’t realised the huge impact this disease has on my life!”
I’ve felt that frustration. I get it. Living with a chronic condition sucks, and you just want people to understand what life is like for you. But using awareness-raising campaigns to vent feels counterproductive to me. It makes people feel attacked and switches people off.
Here’s an example: A large coeliac charity recently posted a question on Facebook: “What do you wish people knew about coeliac disease?” While this is a very valid question (which garnered many helpful answers), many of the responses were people with coeliac disease lambasting their family and friends for getting it wrong. Again, I know it is frustrating to have to repeat yourself (“Yes, a few crumbs do matter!”) and that the impact of other people’s ignorance can be catastrophic. But if you’re not living with the disease, it’s much harder to remember the facts.
We can forget that if we didn’t have to know so much about our diseases, we probably wouldn’t. The reason I know so much about type 1 diabetes, rheumatoid arthritis and coeliac disease is because my health depends on it. I know them intimately because they are with me the whole time – I’ve spent days of my life with consultants, nurses and Dr Google.
Conversely, I don’t know very much about asthma, rare cancers or the different forms depression can take because I don’t suffer from these conditions. If you tell me about your health experience, whether in person or in a blog post, I will be interested and attentive. But the reality is I won’t remember it all. Hopefully the important bits will stick with me, but there is no way that everything I read about every condition is going to stay in my brain. And some falsehoods picked up from elsewhere will probably still lurk unchecked.
We need to remember there are so many other information sources that feed unhelpful misconceptions. These sources often conflict one another and it is very hard to discern fact from myth and outdated advice from current recommendations. I was recently asked by a friend what she could use as a sugar substitute because of my diabetes. Her assumption that I can’t eat any sugar was untrue, but it was a fair one to make, based on the recent media obsession with diabetes and the low carb diet. The level of information you would get from a specialist dietitian is not the same as what you get from a 30 second news article. The distinction between type 1 and type 2 diabetes is rarely made in the headlines. The medical profession itself is in conflict over the best way to manage eating with Type 1 diabetes. It’s a vast and confusing subject!
But what did stick with me was the care she was putting into making sure dinner was safe for me – she was completely interested and engaged, she just didn’t have all the information she needed. I was in a position to give it to her – to empower her to support me! We need to remember to have compassion for those who don’t share our health struggle, as well as those who do.
My advice is don’t get frustrated, get factual. Use every opportunity you have to tell it like it is. You might be helping friends out as well as helping them understand your life. At least four people I know have been for tests to check for coeliac/RA as a result of chatting through symptoms with me. It’s hard work having to constantly explain and deal with misconceptions. But in my experience, people are much more likely to take on information and listen to your experience if you are patient and willing to answer questions that seem obvious to you.
Talk to someone about your frustrations. Your feelings of hurt are real and valid, but they can build up and make you angry and defensive. Not only does that feel pretty rubbish, it makes it harder for people to engage. Of course, some people can be downright rude and bolshy with their opinions on your health and in those instances, it’s perfectly acceptable to be assertive and bolshy back!
But maybe think about your angry tweet before pressing send – is it going to help people understand your situation or just make loved ones who ‘get it wrong’ feel attacked?