Chandra smiling at camera by a waterfall

Owning my MS and not letting it own me

There is a popular phrase people use at the moment about “owning’ your stuff. For example, owning your sass or owning your intelligence. I have decided to take that on board and own my MS.

It’s been difficult to do this and the steps have sometimes felt small and laborious. But a big moment for me was coming out with my illness on social media.

Deciding to share my MS experiences

I am an incredibly private person and have not shared my condition with many people. Even with friends it felt like a drip-feeding process of telling various friendship groups. But I got to a point where I felt: why am I hiding this?

I guess it has to do with not wanting to be seen as different, or as having an ailment, and of how people might perceive me. But that really shouldn’t matter.

After catching sight of my reflection walking and not particularly liking the gait I now have, I was inspired to write a poem about my illness. I then shared the poem and shared my MS with the public.

MS has made me a braver person

The words are very personal and raw but also accessible. So, I hope, able to give people an insight into the illness without overwhelming them.

From sharing my poem I was asked to do a podcast which enabled me to delve further into my experience. The whole process has been very cathartic and I feel a great sense of relief having been so open and honest.

In many ways MS has made me a braver person and has meant I have let go of problems I created myself.  Although I have no control over the illness, I can attempt to take a hold of how I react to it. So that’s what I mean when I say I am taking ownership of my MS and in doing so, not letting it own me!

Listen to Chandra read her poem

Me, My MS and I…

My body, broken, an unsightly gait
My body, broken, in a state.
No choice in the matter, just a random heinous factor
put upon me like someone serving s**t on a f***ing plate.

My muscle strength declining, everything feels tense
Chronic pain and constant struggling to make much sense
of the disease that’s taken over me
preventing me from feeling free
to do certain things
This is the pain I’m in, this is what my MS brings.
I hate it.

The pain is sometimes dull and other times it just burns
Pins and needles, tingles, spasms and gradual weakness
On and on the problems go, never ceasing, never leaving
like a parasite here forever and non-releasing.
 
Cloudy thoughts engulf me, words disappear from my mind
My usual syntax sometimes falters, how cruel and unkind.
The progression like an empty void, no knowing what lies ahead
Betrayed by my own immune system, thoughts often filled with dread
 
Anger lingers inside of me, the unfairness of it all
Darkness overwhelms but I’m careful not to fall
into a state of depression
This is my life’s lesson
and somehow, with persistence, this MS I’ll over-rule.

MS you’re a challenge, in all kinds of ways
Sadly here forever, this disease is here to stay
But somehow I’ll get through this, this girl is made of strong stuff
I won’t give up the fight, I’ll never say I’ve had enough
Cos despite all this, despite the hard s**t, I've learnt to cope
And somewhere in this abyss called life, life can be kind of dope!

Do you have a story about how MS has affected your life? Whether you're newly diagnosed or you've been living with MS for years, we'd love to hear from you. Get in touch at webteam@mssociety.org.uk.