“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

Advertisements

How do you define work?

https://themighty.com/2018/02/unable-to-work-because-of-illness/

Every bit of this resonates with me.

It’s a constant struggle for people like me to remember our worth when there is so much stigma around being sick (especially young and sick) and not being able to work.

It often makes me wonder, how do you define work anyway?

Does work = I bring money to the table every single time? does my voluntary work with kids with troubled childhood which doesn’t earn me anything but makes me feel valuable and like I’m making some difference count as work? Does me trying to help an individual who is newly chronically ill/struggling with their health mean anything in the society at all?

What about the times I teach classes hoping they help those who participate — does that count as work even if it’s not always sustainable? What about the job I did as a receptionist at a pilates studio hoping I’d be able to stick with it and then got bedridden — does that count at all? Is that seen?

Does it matter that people like myself at one point had great aspirations and goals too and had to leave those behind, grieve our old selves and learn to accept what we’re presented with? Does anyone ever see the pain and the courage behind having to leave what brings most of us financial stability and freedom in order to prioritise health?

What about the work you put in day in day out to look after a faulty body? Imagine having to look after an extremely mischievous and sick child who doesn’t listen to you for twenty four seven. No break whatsoever. Not even when you sleep.

It’s easy for people to ask, “what do you do?” because it’s the most common way to start a conversation. It’s also very understandable and I have a standard answer ready. But you won’t believe the number of people I’ve come across up till now with the mindset that if you’re not working, traveling and or working out, you’re probably doing nothing. Or not doing enough of something. Or aren’t ambitious enough. Have no goals. Have nothing figured out.

What makes so many people think that those who’re sick are lazy or not ambitious enough? Couldn’t our ambitions and priorities have changed? Can we not bring empathy, compassion and kindness to the table instead of money? Is it not possible for us to do our part in some other way? Can we not be the people you turn to when things aren’t going right? Can we not support the family and household in other ways?

Or how about this: is it not possible that by us doing our self-work and learning to accept and tend to our illness allows us to manage the illness a little better and hence take some load and burden off those who are trying to support us? Isn’t that work too?

de571634430f2b1329319f195a5b660f
And just as you think you’ve got it all under control, everything changes. It turns into a complete mess. Everything falls apart. Your control doesn’t count for anything. Nothing at all. You find yourself standing on an unstable foundation. Uncertainty takes over. You find fear building up inside of you. One bit at a time, every aspect of your life begins to alter. You are forced to evolve and grow. Your story changes. Your goals and aspirations look different. Your priorities are reshuffled. Your relationships are affected. Your truth starts to unfold. You realize you don’t seem to fit in anymore or that you never did. Your plans were just a dream. Your present becomes your reality. Your reality creates more opportunities. You realize that stepping forward requires stepping inwards first. A new set of doors suddenly open for you. You look back and see that some doors remain closed, some people belong in your past and some plans you thought your life depended on, just don’t matter as much anymore. Nothing looks like what you expected it to one day but you know it was meant to happen. Even if you don’t fully understand where it leaves you at, you know it was all for good.
Life continues to take place; every moment, every breath. Stay true, stay present. Stay grateful for what you have now because chances are, life won’t always look the way you thought it would.
❤︎