I have a serious question.
There’s a lot of us across the world living with MS – some new to it, some ‘old hands’.
Do the people who have been living with MS for a good few years feel somehow separate from all those newly-diagnosed people?
It’s a personal question for me; regular readers of my blog will know that my dad died of MS complications when he was 35: he had Primary Progressive MS.
With that in mind, I didn’t hesitate to have Alemtuzumab treatment when I was diagnosed with highly-active, or rapidly-evolving MS in 2012.
Yet, when I attended MS-oriented events, there seemed to me to be a clear division between those who had benefited from the rapid advance in MS disease modifying drugs and those who had not had the opportunity to take them.
However, I have also met people younger than me with a drastically declined state of health that no amount of disease modifying drugs could halt. Where do they fit in?
Over the years since my diagnosis, I have heard from fellow MSers:
- You don’t really know what it’s like to have MS.
- You’ll never suffer the way I do (from a sprightly 70-year old)
- MS? You don’t know the meaning of it – you’re cured now you have those drugs.
Is this helpful?
We do at least have something in common – the abject terror a diagnosis of MS brings. So why can’t we unite in our fight against this illness rather than comparing ourselves on a scale of 1 – 10?
Why can’t we be happy that significant advances in medication have been made, so that future MSers will enjoy an easier life? Isn’t this something to celebrate?
I will be forever grateful for the treatment I have had. It has given me back valuable years with The Teenager. And I am saddened there are not such a vast range of treatment options for those with a more progressive form of MS.
Yet, if we can unite, and stand up to MS together, no matter what hand it has dealt us, surely we are stronger?