Diagnosis: A Blessing or a Curse?
Having convinced me to go to a doctor to check this out, my husband joined me for what would be an appointment with a locum who was both dismissive and patronising, and who left me with the words "I can't find anything wrong with you; this is very subjective." She then proceeded to give a dismissive laugh and suggest I see a neurologist in a few months.
I will not bore you with the details but after further wranglings, I decided to go to a private doctor (please don't judge me!), where I was prodded and poked via various tests. Just before Christmas 2008, I was given a firm diagnosis.
The MRI evidence suggested it was clearly Relapsing-Remitting Multiple Sclerosis, based on the numerous lesions all over my brain and, in particular, my spine. There would be no second opinion; I was having a relapse.
Unbeknownst to me, a few years before, I'd suffered my first relapse having gone blind for six weeks. However, while a lot of people have Optic Neuritis, not all go on to receive this diagnosis, so after having been discharged in 2005, I didn't give it much further thought. MS is much like a jigsaw puzzle. Often, doctors need a number of pieces to give you a firm diagnosis. MS had been presented to me as a possibility but like with most things, when you're discharged as an outpatient, you don't think it's going to happen to you. Like some things, sods law says it will.
So here I was, the same person but with new, life-changing information. I had a mini-meltdown in the car park, but managed to get through a call with my parents and another with my manager, taking the next two days off work to research the hell out of my MS. It was my way of feeling like I was back in control.
I've since spoken to lots of people who have gone through diagnosis, and their approaches are almost always different. Some MSers are very nonchalant about the situation, others can't even speak about it. What is common is that there is almost always a sense of loss.
In the coming weeks, months and years, I went through all of the stages of grief, from denial, bargaining, anger and depression, as I took in the fact that I had MS. There was also oddly a sense of relief, finally knowing after years of wondering.
Elisabeth Kubler-Ross was a psychiatrist who wrote a ground-breaking book, 'On Death and Dying,' outlining five stages of grief. Since then, this has become a change model to help people through periods of transition, like restructure and diagnosis. This was invaluable to me in later years when I realised that what I had gone through was utterly normal. For a long time, I kept my MS quiet, even keeping it from my close friends, as I dealt with it gradually.
A realisation I have had is that I do not accept my diagnosis, although technically that's not true as it's a fact, just like my date of birth or which school I attended. What I mean is that whilst I acknowledge its presence, I see it as a bully, something that exerts its strength and influence upon me. Sometimes, I concede and my bully wins, but only because I know most of the time I will fight it in my own way. I'll keep being the best I can be and I'll keep trying to confound it! Whatever is in my control I will embrace, whatever is out of my control, I will learn to let go.
If you're reading this and have been recently diagnosed, this is not a death sentence. You will have to learn to adapt and to fight it in simple ways. Whatever you're going through is completely normal, and you will come out of it in one piece, even if it doesn't feel like that right now. You will have your up days and down days but you will continue to be extraordinary in your own, unique way.
