Patience. What’s that?
In today’s world where you can get an Amazon parcel delivered same day, at worst, next day – patience is something that a lot of people my age lack.
Long gone are the days of ADSL internet and having to wait hours to edit a Geocities website. You can do anything online in a matter of seconds.
Living in London, I can usually get anything I need or want pretty quickly too. Places are open late, food delivery of any type of cuisine arrives at record speeds.
Sometimes (ok, a lot) I am the most impatient person available. I like to get things done. By default, I have a personality that is high energy and anxious.
A diagnosis of Multiple Sclerosis is not a fast or easy situation to be in for anyone who does not have the chill factor of a snowman. Unlike lots of things in life, even a lot of money often doesn’t/can’t speed the whole thing up…
From my last episode of symptoms to diagnosis it took 4 months, and that is because I paid to save myself the mental torture of waiting another 3 months (my NHS appointment would have made it 7 in total, and I am very lucky to be able to afford an appointment).
I had already been told I have MS by my GP, accidentally by my physiotherapist (it’s good when they blurt out there’s lesions on your brain and you have to pretend you knew already.. awks) and the radiology reports were pretty self explanatory.
I’m not the kind of person where not knowing is a welcome strategy of coping. I need to know everything and now.
Knowledge is power and I prefer to arm myself with as much information as possible. Even if it’s bad, I’d rather know and deal with reality. As though I’m ‘doing something about it’.
Working on the internet my whole life means I have some pretty amazing Google research skills. One positive I’m willing to admit about myself, as a self deprecating Northerner!
Once I managed to find a long lost girlfriend of a man who owned a restaurant in France, with minimal information. She didn’t use Facebook, he had tried. So all I had was a maiden name, a location, a short description of her life and family, the business her dad was in. It took me about 6 hours of reading paperwork for shipping companies and boats to track her down, and it turned out she was actually dead :(. I didn’t tell him.
A diagnosis of Multiple Sclerosis normally has to meet the McDonald Criteria, and everything else has to be ruled out. It’s not something you can diagnose without the evidence, as 1. It’s a serious disease, 2. The drugs you will then take (if necessary) are strong and expensive medications. A mistaken diagnosis wouldn’t be great for anyone involved.
Patients need to have evidence of two clinical episodes (relapses) and proof of disease activity in different areas of the CNS – brain and spine, or two areas of the brain. Lumber puncture results can also help diagnose the disease quicker too. Many people have relapses separated years apart.
There are people out there who have waited decades to receive their diagnosis. I consider myself lucky. My diagnosis was relatively quick, almost 3 years from my first ‘episode’. Luckily for me, I had no idea I might have MS until July last year. The mental element of ‘Not Knowing’ for years, or being told you might have MS but do not meet the full criteria yet – is difficult to come to terms with. Patients need patience.
There is more and more evidence that the sooner you treat active MS, the better. I was told that if you are treated with a disease modifying therapy within the first 5 years, this can have a lasting impact on long term disease outcome.
However, it is not often a ‘medical emergency’, so even if the scans show you are riddled with lesions, you don’t necessarily need to have started a DMT yesterday. It can wait a little while – unless you are in an active relapse and may need steroids to help recovery.
I think Multiple Sclerosis can teach many people the true art of patience.
Learning to wait for weeks between scan results, waiting for decisions to be made regarding your treatment, if you are able to physically have it, organizing vaccinations, waiting for the treatment itself. None of it is quick for most of us.
Noun: “The capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious.”
Couldn’t we all do with a little more patience? Deliver my ASOS order a day late, these days I don’t mind as much 😉