In an age where we all feel that we are but a few clicks away from self-diagnosis, we reach for technology to explain things.
In my own case, I presented to a high street opticians with optic neuritis which was referred the next day to the eye department of a local hospital.
Several slit lamp, visual field, peripheral vision and colour vision tests later, I was told that I should probably wait 6 weeks and it would be monitored to find out if it would resolve, but I should wait for the consultant to get a final decision.
I am eternally grateful to that consultant for requesting an MRI, which subsequently found lesions which would mean a referral to neurology to confirm that previous attacks which were put down to ‘stress and anxiety’ were actually more likely to have been attacks of MS.
In course of 2 months, I went from a presentation of optic neuritis to a referral to neurology for diagnosis of MS, and I consider myself very lucky. Many others have faced prolonged diagnostic tests and months or years of anxious wait to be labelled with a disease that they have very little control of anyway.
For me, the most impressing feature of MS is uncertainty.
It’s not just in a diagnostic, future planning or symptomatic sense – but the sheer uncertainty from the very beginning.
From the onset of the first clinical symptom which means presenting yourself to a GP, hospital or opticians, there is mass uncertainty about the cause of the problem. Weeks will pass and eventually you will receive an MRI, from which it can be discerned that there is a problem – but that’s far from the end of it. That’s just the stepping stone to a series of new and equally frightening experiences of increasingly more serious looking medical staff telling you that there are symptoms consistent with a demyelinating disease which could or could not be multiple sclerosis.
In the event that you do eventually receive a diagnosis of MS, the uncertainty is far from dispelled.
Reaching once more towards the internet, you find that there is no shortage of information on MS; from potential causes to coping techniques to support groups and forums – there is a huge amount of literature and information in various forms that you can read until your blurry eyes can take no more. But they everything written will tell you the same thing: There is no eventuality.
There is no defined route out of the muddle in your mind. To understand an illness you have been diagnosed with, you want to know what to expect, how it will affect you, when things could get worse. No one of the thousands of web pages can tell you what you are looking for because there is no answer.
And so the uncertainty can never truly resolve, not with diagnosis or even offered treatments.
Therefore the hardest part of MS is not the attacks, which we can deal with. It’s not the stigma and preconceptions that people have of wheelchairs and paralysis, for which we can educate people. It’s not even the knowledge that, in time, it’s likely that things will most likely get worse with advancing years struggling with the illness.
The hardest part of MS is the daily uncertainty of not knowing what is next, when you will be affected and how you will go about your life.
Acceptance of this, for me at least, will be a difficult process which no amount of MS specialists, nurses or treatments can possibly ease
MS is a personal illness.
It will affect every individual in a different way, albeit perhaps with similar symptoms and with some time passing between those symptoms.
At the neurology department today, I saw an older lady who has MS. It was clear to see that it had progressed to secondary MS as she was in a wheelchair and suffering quite badly from ataxia.
She was with her husband in the waiting room beside the water cooler. She unsteadily picked up a cup and took it to the faucet of the tap and repeatedly tried to reach to start the flow of water when her husband tried to intervene and dispense the water for her.
She tipped out the cup, scowled at her husband and eventually, in her own time and of her own accord, managed to fill the cup.
It was clear to me that it wasn’t simply refusing to accept help. It was her way of saying that although she was enduring the effects of her own body attacking itself, she would not let it get the better of her.
I hope this steely determination is in all sufferers of MS. It is necessary to navigate the maze of emotions that it evokes in everyone who faces it in their lives; whether or not they’re currently ‘suffering’ its effects, or indeed, its uncertainty.