Today is World Multiple Sclerosis Day- World MS Day.
Where this will possibly mean nothing to most (hopefully); I’d like to tell you how having multiple sclerosis has changed my life.
I was officially diagnosed with multiple sclerosis at 2:30 in the afternoon on the 21st of January 2021- 16 years after having my first attack which had put me in the hospital for a while. Though numerous doctors had diagnosed me from Johns Hopkins etc and I had lived my life keeping in mind that in all likelihood it was MS I was dealing with, I still needed an official diagnosis from an Indian MS Specialist in order to start DMTs (Disease modifying treatments).
The diagnosis, though late by almost 2 decades still felt harsh and ruthless and made me feel very very scared. But it also allowed me the relief that all that I was feeling was indeed very, very real.
Let me decode this. If you have a cold, which you got because you kept your hair wet and sat in the AC and I meet you; I then get a chest cold which will last 3 -4 weeks after your 2 day cold. I will experience breathlessness. I will have chest pains and I may need to a nebuliser at a hospital because of breathing issues.
I have pain. All the time. You can’t see pain- much like you can’t see air. But it exists. More often than not it comes in spasms and causes tears. The good thing and the annoying thing, is that also these pains go often as suddenly as they come and so if you were to ask me about how my left arm is doing… I’d probably say “fine” cause it may have been awful 3 hrs ago but now the pain simply doesn’t exist- at least on the left arm!
There are MS days where there is slurring, walking a bit drunk (without having a single drink) and where I just want to curl up and sleep it off.
But you can’t sleep off MS. It is painfully real and massively under diagnosed or in some cases not diagnosed at all.
With the DMTs I now push a 9 inch injection into my leg every 2 weeks. It’s self administered . It’s painful. And 8 hours later, I am sick with the flu. I make fun of the injection. I make an event of every injection and I eat comfort foods straight after to make it all less scary.
The only thing that is wonderful-is that I am surrounded with love.
My family and friends don’t choose to pretend to “know the pain” , they don’t ignore new symptoms and they are there to learn, listen and support.
If you know anyone with this disease; read up about it. But don’t give advice on how to deal with it better or “what will make the pain less”. Know that every day , we are always looking for something to make it better, make the pain less and make this awful disease leave us.
Listen and support. Know that we may go wrong sometimes and cause more pain than less. But we will learn quickly and please avoid the “I told you so’s.”
As one of our very first music videos that we created loudly said “Mere joothe me toh chal ke dekh.”- Try and walk a day in my shoes… be a strength, not a rumour monger.
Also, and I know this shouldn’t need to be said- But I must. You can’t catch MS. You can marry if you have MS and have kids. You can work and get a great job with MS… or like me own a company or 2 ☺️. People with MS live wonderfully long and healthy lives. MS is not genetic. With the certain tweaks and lifestyle changes I have made, I probably push myself a lot more in the day than you. I am also much more self aware of my body and of myself.
MS is hard. Don’t make it harder with misinformation.
P.s-: On World MS day my only hope is people don’t wait 16 years for a diagnosis. I hope that people get the treatment they need as they need it and I hope that people don’t fear those with MS but instead learn to be there as a support.