The secret life

While I’m very open and honest about my personal experience with EDS Hypermobility, there is also a ‘secret life’, what I call the back end management which not only is something we (the chronically ill) often choose to not share but also something we often can’t share due to the complexity and implications of actually dealing with the illness 24/7.

Most people I know in the community of the ‘chronically ill’ live as authentically as possible and try very hard to share their stories, both to create awareness and for their personal healing and I find that truly inspiring and amazing.

That said, it’s important to keep in mind that it is NOT the whole story. It can’t be, unless you know us personally. No matter how much we try to put our experience out there, it is not the same as living with us and seeing us live — which is something only our near and dear ones get to see.

On my instagram, I try to share both the good and the bad. Whenever possible, it is as raw as it gets. But the truth is, for the number of times my shoulder (or other joints) clicks in and out, for the hours I spend in bed with ice packs and hot packs and the number of times i get palpitations, brainfogs etc., it is practically impossible to be both having the actual experience and sharing it.

I think that’s the reason why so many people who don’t know me well enough, whether biologically related or not, are under the impression that if I smile I am pain-free or I’m not struggling. And sometime, instead of asking, it is assumed that I am fine. Or better.

Similarly when I am bedridden, it is quite commonly assumed that I am sad to the core. Which again, is an assumption.

The truth is, the ‘chronically ill’ have figured a way to be smiling and struggling at the same time. I know it can get extremely confusing for the rest, but if you ever wonder how we’re doing, I suggest you ask instead of assume.

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Don’t let anyone rush you through your healing process. It is not selfish to take the necessary time that you need in order to heal wholly. Don’t let anyone tell you that taking time to heal is selfish. In fact, it is selfish to rush others through their process just because your pace is different.  Forgive and continue on your healing journey. 

#Loveofallkinds


Love, because how else do you open doors to growth, happiness and peace?

Love, because how else do you become a more refined version of yourself?

Love, because how else do you learn to become more available for others and yourself?

Love, because how long can you possibly guard your fragile heart and remain surrendered to fear?

Love, because true strength lies in being vulnerable and being soft – with yourself and others.

Love, because even if there’s a risk of heartbreak and pain, there are rewards far more valuable than those transient waves of sadness.

Love, because when you choose love, you choose life.

#love #loveofallkinds

Three years back

Just about three years back, probably towards the middle of a very #dark phase of hating my body, I swore upon myself to never travel until I felt #ready. Unfortunately, I didn’t believe I’d ever feel ready enough to live in this body or #travel with it. While most people of my age were getting excited about traveling, I was feeling trapped in a body that only looked normal.

There came a point where I didn’t want anything more but to be able to look after myself, #trust my body again and be okay with where I was at. It was such a #challenge because there was absolutely nothing trustworthy about my body. I realized I could care less about seeing the world or chasing goals if I couldn’t even wash my own hair or walk around my own house.

I left a part of my past behind, took a couple of major leaps of faith and started living on my own. I decided to create a routine which provided me with the kind of stability that my body lacked; that my #environment lacked too. The idea was to build myself up again, to become comfortable with the cards I was dealt , to #empower myself and honour my #health. I had to re-imagine a life that is different and also learn to believe that different doesn’t mean bad.

After three years of the very same #routine and #lifestyle – Physiotherapy, Pilates, allopathic medicines, complimentary therapies, lots of positive-self talk, re-connecting with my creative self, allowing myself to cry and experience grief fully, accepting limitations, fighting for instead of against my body, letting go of people, places and situations which didn’t serve my new self anymore, feeding myself nourishing food, learning to find reasons to be grateful — and something shifted within me. I suddenly craved a #change, a mini #break from this routine that I had created for myself. Some time away from it to see how far I’ve come.

I’ve got more information now. I can see the #progress I’ve made and there’s more to learn. To be honest, I don’t know when I’d feel ready to travel again and this time it doesn’t matter at all. It doesn’t make me feel any less or more because I believe time will come when it must.