“distract yourself or find a hobby”

Most people think that people like me who spend a lot of time at home are in need of hobbies or distractions of some sort. You know, something that can take our focus off our pain and suffering.

After ten years of dealing with Ehlers-danlos Syndrome Hypermobility Type, I can tell you this — while you can’t get your focus off pain entirely even for a fraction of a second, you can learn to acknowledge its existence, know that it’s going to be there with you and  still find ways to work with and around it. 

People like me who have had to leave a full-time job and figure out new ways to become financially independent (whether fully or partially), will once every while come across someone who tells us to distract ourselves from our experience or find hobbies since we have nothing else to do (according to some).  The thing is, not all of us are looking for distractions or hobbies.

Whatever you see me doing outside of my health routine are things I WANT to do for  reasons you may not always know. There is usually a detailed thought-process behind things I choose to do or not do.

I am currently completing a life coaching certification not because I am desperately in need of a hobby but because it’s been a personal and professional goal for me. It is something that calls for my strengths and aligns with my purpose. I want to be able to extend support while trying to support myself. I’ve always wanted to do it with the intention of setting up a business, one which doesn’t jeopardize my progress and allows me to work from home or bed for that matter. It might take time but that’s okay with me. I’m not doing it because I have nothing better to do. I’m doing it because I WANT to do it.

I taught classes throughout last year because working with people, helping them channel their creative energy, creating a space where people from all walks of life come together and open up is what I wanted to do. It was catching up big time and just then we decided to move countries. For me, conducting group classes centred in creativity and healing was a step in the right direction. Something that now makes me feel prepared to be a coach.  I didn’t do it because I needed a distraction. I did it because it felt right. And just like most people my age, I wanted to be able to at least partially pay for myself. 

I write (and share) because I believe writing is healing. I write with the hope of building a connection and community. Again, not because I need distraction. 

I cook because I’ve always been passionate about cooking for myself and people. It’s basically a way for me to express my creativity, apart from other art forms. Considering that I’ve had to leave dance and my career in design behind, cooking and making food look good keeps my creative energy running. I’ve had to train myself in the kitchen from scratch after not being able to prepare a cup of tea for myself at one point. I don’t cook for distraction. 

I volunteered with kids from troubled childhood because, given my personal experience, I’ve always had a soft spot for kids and believe so much in ensuring that children receive love,  the right kind of support and opportunities for growth. I didn’t do it because I needed to pass my time. 

It’s so easy for people to assume that if we’re at home, we’re bored or lonely or missing out. Sure, not all days are great but that’s the case for anyone else too. Personally, though, I’m not bored or lonely, and I rarely experience the fear of missing out (fomo). Yes, there are limitations and sometimes it sucks but on most days, I’m happy, grateful and at peace with where I’m at. More so because I know where I’ve come from. Honestly, I’ve probably never been better and I say this despite having lived pain-free at one point. I love being at home, prioritising my health, stepping out when I feel like it, going to places that feel right, hanging out with people I love, doing things that make me happy and finding joy in little things. I, for one, don’t need any form of distraction. 

Distraction is yet to prove itself to me. It has never worked. In fact, when I tried to distract myself from reality, things got worse. What you resist, persists. When I pushed myself, tried to act “normal”, I suffered more – mentally and physically. My health deteriorated at a very rapid pace. It took a lot of self-hate, pushing beyond my limit and attempting to distract myself from reality for me to finally press PAUSE, look at my priories and figure out a new way of living. Coming face to face with my reality, every raw bit of it, is what got me where I am today. 

Point being, don’t suggest distraction as a coping mechanism unless we clearly say that’s what we’re looking for. 

Trust us when we say we’re trying our best to create a different life. Who said different = bad anyway?

Support us because you believe in what we’re doing rather than from a space of sympathy or pity. Show us that you see past our illness. Tell us that you think we’re capable of embracing the illness AND following our dreams at the same time. Ask us if we need help in getting there. 

Love,

M

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.

Line

I wonder why things have to be so extreme out here.

Either people help you or they don’t give a shit. Either you’re expected to need help all the time or not need any. If you ask for help too much, you’re considered helpless. If you don’t need help (they want to help) and you say, “No, thank you!”– that’s rude.

If you expect people to look out for you, you get no say as to what’s okay and what’s not. You don’t get to draw a line and drawing that line is so necessary! People hover over you day in day out as if you’re in need supervision when all you need is perhaps for them to check on you once in a while. If you tell them you need space, they take it personally as if it’s all about them when it’s more about your personal space and what helps you heal.

I’ve noticed that out here, you are forever expected to entertain and be entertained when all we need sometimes is some quiet time and letting each other be. I fail to understand how a group of people can start chattering away at the crack of dawn and continue chattering away throughout the day, only taking breaks to use the loo and shower, and perhaps to sleep.

I see how there could be some positives to spending time together and doing things together — I mean, I love it too! Cooking and dining together, sitting around and catching up, playing games as a group… all that is great for bonding! What is beyond my understanding is how people don’t need pockets of their quiet, personal time to tend to themselves.

(I mean, sure, we all function differently and by no means am I saying it has to be just one way or the other, but let’s just say, it’s absolutely hard for me to relate to. Just like my illness and my lifestyle is hard for others to relate to.)

It’s such a misconception that tending to yourself means you’re selfish.

Self-care is neccessary.

When you learn to tend to yourself, you are able to be at your best self for others. When you learn to give to yourself first, you learn to give wholeheartedly to others. It’s through learning to set healthy boundaries for yourself that you learn to respect those of others. It’s through sharing quiet moments with yourself that you can truly share time with others. From my understanding, for us to forge deeper relationships with those around us, we must begin with forging a deep relationship with our ‘self’ first. And maybe this concept is too foreign for some parts of the world but personally, it has made the greatest impact in my life and how I’ve come to terms with my illness. The journey of self acceptance has a lot to do with self-care. And self-care has a lot to do with drawing a line.

If there is anything that I truly wish for, it is for our culture to introduce concepts like self-care and healthy boundaries from a young age. Imagine how far we’d come.

-M

Thank you


I just feel like saying a big thank you to all those who've loved me through my struggle with finding a diagnosis, leaving an old life behind, resisting a new one, accepting and coming to terms with where I'm at and making drastic lifestyle/career changes in order to manage my health.

Thank you for loving me despite my chronic illness.
Thank you for learning to grow with me ❤️

You didn't have to be family to promise that you'd be around whenever I need – you just chose to be there for me. Thank you!

So proud of this girl!

She sent me a message on Instagram right after reading a post (Measured steps) on my Instastory. Check it out!

I shared this screenshot on my Instastory with my response in pink. It’s meant for everyone who’s dealing with an illness and serves as a reminder to myself.

Measured steps

My back is in a terrible shape again. I haven’t been able to get out of my bed since last morrning, after my short walk. It’s been spasming pretty badly, making it difficult to rest.

Clearly, it can’t handle much activity at the moment. And, that’s fine too. It’s only understandable.

Last 5 days or so have been rather busy (strenuous for my body) with hospital visits and I also attempted walking a small distance yesterday and day before. Obviously, it doesn’t feel great seeing that my back has lost so much strength due to a flare up at the start of this year.

I haven’t fully recovered yet and I can tell that recovery is going to take MUCH long than what I first anticipated. In fact, somewhere after 4 months of being bedridden, I stopped wondering when I’d be okay because it was only making things harder. I was doing everything right, putting all the tools I’ve learned over last so many years to use, resting as much as possible and yet my back wasn’t improving.

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Once again, I realized that the only thing in my control is/was my response. I was doing my very best. My body was going to take its time to heal and I couldn’t magically put my back together and make it okay. That’s not how it works :) All I could do was continue doing things that could potentially help my back recover. I figured I’d rather accept the new baseline, the present, and learn to work around it.

Comparing myself to last year wasn’t helping just like comparing myself to pre-illness didn’t help when I was learning to accept my new reality. It made me feel stuck. I’m now at a point where even if I accidentally happen to push it, I might get bedridden all over again and I’d hate for that to happen.

Learning to work around new a baselines (and we may have many new ones in future since it’s a chronic illness) is the only way forward. Unfortunately, you take a risk each time you attempt taking a small step forward — you can’t fully be sure it won’t hurt you and you won’t know till you try. #chronicillness

See where you’re at, listen to your body and take a measured step forward. If it works, be patient and continue to take slow, measured steps. If it doesn’t, be EXTRA gentle with yourself — rest, adapt and try all over again.

It’s barely ever what you see

Here’s the thing about looking like a perfectly healthy individual when the truth is something else altogether

A bus has to wait for you to get into uber and the driver thinks you’re this fit and fine woman taking her own sweet time when you’re actually calculating every action and movement because both your shoulders are still hanging off loose and no body sees it.

You rush a little bit, your joints dislocate. Everyone’s fine. You’re not. Accidents happen and insurance companies might reimburse you a certain amount but that’s not going to get you your health back.

Well, you can’t expect every other person on the street to know your story and that’s unrealistic. I’m writing this post based on nothing but fear, a very natural fear that doesn’t paralyse me mentally or emotionally (or even physically) but serves as a reminder to stay fully aware because that’s all I can do to protect myself. That’s all anyone with any form of disability can really do. And yet, despite all your awareness and presence, things happen. Shit can go wrong because there are so many other factors at play too.

Point being, let fear serve and guide you instead of  letting it paralyse you. Acknowledge fear as a self-protection mechanism and do what’s needed from there. Whoever says they’re not afraid of anything are definitely lying to themselves and the world.