I have been thinking about our attitudes towards a certain topic quite a lot recently.
It is somewhat an anvil of a word isn’t it? It brings to mind dramatic scenes from soap operas and the clutching of Kleenex. We see diagnosis as bad news because it is the indicator that something is wrong. As a minor detour lets look at ‘wrong’:
wrong (rông, rŏng)
7. Unacceptable or undesirable according to social convention.
People have clearly put a lot of thought into this word, and what it means. However I personally think wrong itself is wrong and that humanity established that there is no such thing as ‘simply wrong’ a long time ago. Even for things which 99.99% of the population are adamant about, the 0.01% still has an opinion. It is still right for the remaining few. Plus if anything was truly wrong wouldn’t it just fail to exist? There must be a grain of right in every wrong. When people go to the doctors we should ask if they are okay- not “What’s wrong?”.
Which brings me back to the topic of this post. When people go to the doctors because there is something amiss they go to find out what the problem is, and thus what they can do to sort it out. Of course some will receive a devastating diagnosis, medical verdicts I can’t even imagine having to receive. Ones with time labels, with words like ‘progressive’ and ‘palliative’ attached. For these people diagnosis is often not a good thing, it is a realisation of a horrible truth which some might well prefer not to know.
However imagine having an ailment which no one can attempt to fix, because they don’t know what it is for definite. Imagine ticking some boxes for one condition, some for another and falling into the canyon in between. You have a ‘hum’. Something which requires occasional mentioning for practicality’s sake, but yet has no name. Perhaps doctors don’t listen, family don’t understand. But you are not wrong. You are just experiencing something different to the people who you cross paths with on the way to the shops, sit next to in waiting rooms and work alongside at work/school. Being different isn’t a bad thing as long as you are comfortable and accepting of your difference. Plus there will be at least one person somewhere who is going through or has gone through the same physiological battles as you.
Lack of diagnosis is something which many people encounter. It is a day to day struggle to describe something which doesn’t have a name. Having nowhere to direct people to for more information and no support networks you can fully identify with. This is a problem across the board- for those with mental health problems, long term illnesses and disabilities. It seems you can’t get help until you get a label.
We see labels as bad things, when in reality we all have them hanging off us day and night. Some are positive and some are negative. At summer school last year one of the most emotional experiences I had was when we all rotated around the room writing labels for each other and then sticking them onto the intended person. When it came to reading the stickers people had given us there were hardly any dry eyes in the room. Seeing good labels; positive affirmations and compliments makes you feel good. If you ever get a bad label (which in this example at a Christian summer camp was unlikely) at least you can see it. You can make efforts to change, rub out the pencil scrawls and replace it with something positive. But what about a blank label? What can you do with a blank label? It will always be there but no one knows what it is, you know how it feels to have it stuck to you but you can’t give it a name. No explanations just thoughts.
I have never cried out of sadness when I have received a diagnosis. I have been lucky that none of them have been life changing, they only added some clarity to what I already knew. They came after a long time of searching, upset and confusion. Once the blank label had been written on I knew what the hum was. No more scary guesses, just answers. Especially in the case of mental health, where a condition can make you think or do things which you disagree with, it brings solace to know it is not your personality causing it. It is a disorder or illness. In the case of my OCD the original lack of medical intervention riled the guilt and self-doubt which is integral to the condition. I had been told I was ‘just a teenager’ too many times, and was digging myself into a rut. However after a referral from a different doctor and talking through my ‘quirks’ for an hour in a room of many chairs, I was given diagnoses. I cried with relief because someone believed me. Someone else saw this hum as a problem. The story is similar with my sight loss, years of searching lumbered with a blank label, concluded with a medic wielding a metaphorical sharpie- writing the name, and with it engraving hope for my future living with this condition. Diagnosis is day 0: from then on you know what ball game you are playing and how in the long term you can win the tournament.
To everyone holding a blank label:
Don’t give up. I don’t have the sharpie and the knowledge that you need, but I will certainly write ‘hope’ on the back of your hands. Don’t let the label choke you, wear it on a bracelet. Then hopefully one day you will find you are wearing it less and less.