I Can't Believe We're Not Better
Something chronically ill patients encounter on a regular basis is disbelief. This comes from strangers, friends, family and even our doctors and nurses. We are often met with doubt and scepticism over the extent of our condition, sometimes even from those closest to us.
We’ll encounter those phrases which are the verbal equivalent of an eyebrow-raise. Those occasions where we are made to feel we are being ‘dramatic’ about our experience or describing our symptoms in excesses which are considered wholly inaccurate.
This is a common aside in living day to day with chronic illness, and in my opinion, a much more damaging problem than it may look at first glance.
You see, when you minimise or even dismiss someone’s pain and suffering, it causes often unseen and, in some cases, irreparable damage.
You may think that overtly dramatic, or perhaps even complete nonsense; but try to take a moment to put yourself in the shoes of someone living day to day with crippling pain (physical and/or mental). For a start they are probably wearing surgical socks so wave goodbye to any semblance of style you may have had. But mainly, consider how you would like to be approached and treated by those around you if you were ill. Would you like to feel comfortable, open to express yourself, perhaps even loved and cared for? It’s what we all want isn’t it? Health issues or not. As human beings, every inch of us craves love and acceptance. And why shouldn’t we? We only have one life; why not strive to live it in the happiest way we possibly can?
Now consider that same scenario; you are suffering deeply. You venture into talking to someone about these feelings, and you are met with indifference. You are staring into a brick wall of scepticism, rolled-eyes, and judgement. You are not believed. Feels horrible doesn’t it?
Something I’m often asked as a patient who talks a lot about her issues on the internet, with friends and strangers alike, through a mega-phone in public car parks, and by holding up 80’s boom-boxes outside the houses of former lovers, is what those around us can do to make our lives a little easier. Most people I encounter are persistently kind and keen to help; they want to be allies to those of us who are perpetually poorly. But there are those who just want to out-do us, ‘trump’ our experiences, or assume we are telling the whitest of lies about our lives. They choose not to believe us because they simply can’t relate to us, or have an bizarre sense of jealousy at any semblance of ‘attention’ we receive for an illness.
It should be easy to brush these attitudes off and move on. Skip off through the wheat fields in slow motion like a love interest from a 1940’s film. But it isn’t always that simple. For starters, slow-motion technology is more expensive and complicated than you might first think, and we are generally fitted with those annoying features called ‘emotions’ which can often overwhelm and upset.
The moments where a doctor, or worse someone I love has doubted me, have stayed with me for much longer than I’d like. The years I was doubted delayed my having life-saving surgery. They almost made me unemployed. They almost ended relationships. They almost killed me.
Believing patients is vital.
We know our bodies, we know our minds, and we know when those things are not working as they should. We need you to listen and learn, help aid our recovery and attempt to understand what we are going through. We need you to work with us not against us.
If you choose to judge and disbelieve someone who comes to your proverbial door with their fears rather than offering them an abundance of empathy, then you’ll find that door might just slam in your face a lot more than you’d like. Just bear in mind, that its always better to be kind.