Chronic conditions and the modern world: a conflict

Living with a chronic health conditions in the modern world: a conflict

Oof. Where do I even start?

Friends, family, colleagues, fellow students… y'all probably already know I have a hot pot of conditions I'm walking the tight rope of holding space for rest and testing the boundaries of my abilities… I have hypermobility, inflammatory spondyloarthropathy and now endometriosis. Endo was a spicy fun surprise this year.

Fuck me, the past 12 months have been a real test. It might be the one of the most challenging years as of recent: mentally, physically, spiritually and emotionally.

And I think I can safely speak on behalf of my chronic health condition family and say:

THE SYSTEMS WEREN'T BUILT TO SUPPORT US ALL

And I add to this a potent quote:

"It is no measure of health to be well adjusted in a profoundly sick society"

And whilst 90% of the time I genuinely believe my illness has been the biggest blessing for a massive shift and course correction… I've had numerous layers of grief with it.

My drive is fed by a desire to help myself live pain free… to heal those shadow parts of myself who rippled out and manifested in disease and bring an end to cyclical generational trauma. And if I learn how to systemically and fundamentally heal myself, I can help others too.

My drive is fed by a desire to create, to learn, to express and share. Because we creative creatures are fundamentally creators… It gives us purpose and serves as a methodology of cleansing, learning and healing.

But this modern world underestimates the subtle nuances required for healing. It forgets the hypersensitivity that is a superpower for us all.

Our innate human nature is deeply rooted in our oneness. And for oneness to exist we must coexist and we must embrace our interconnectedness at the deepest and most fundamental level.

I believe we, those who struggle in the modern world… are sensitive. We are susceptible to the onslaught of unnatural and aggressive ways of modern living.

And it's making us sick.

There are certain norms that simply do not bode well for us.

Working hours. They are strictly designed with men in mind. And even then EVEN THEN, I don't think the grind is healthy for them. Women fluctuate. Give us a monthly rota around our cycle and watch us thrive. Don't give us weekly rotas and expect us to meet quotas that are the same 4 weeks of the month, 12 months of the year. We need to shift with daylight hours.

Seasons. Why do we try to push through an introverted barrier, fight against the seasonal tide, and live like every season is summer?! Nah I wanna hide myself away under a barrage of blankets and barricade my doors with hot water bottles for my arthritic creaky bones. I want people to understand I want to hide and not take it personally but see I'm trying to survive the overwhelm.

Food. Oh ma gaaadddd. I don't even know where to start. Majority of food establishments are not suitable, the modern fads, the conflicting nutrition advice, the one-hit-wonder-miracle pills. HOLD MY DRINKKKK. The mono-crops, chem filled, artificial, processed, messing-with-natural-foods, growing and serving veggies all seasons when it's out of season.. fucking with Earth’s growing rhythm. WHAT ARE WE DOING?!

Socialising. I DON'T WANT TO GO OUT IN THE DARK. I don't want to party like I'm an insecure 18 year old again and drink until I lose myself, because I've found myself and we're quite content staying together. I don't want to drink copious amounts of booze, feel bluesy and trigger my ill-health pains. But fuck yolo and screw fomo, have you heard of ttfn?

And dating… ohhhh myyyyy jeessssussss. This is terrifying because it's socialising issues on steroids. I'm sorry, I have a very strict diet that enables me to function (it's really simple really no processed crap, no nightshades no grains but that blows the brains of most tbh). So your Italian restaurant isn't gonna cut it and actually I might be fatigued last minute but no I'm not sick right now but maybe, can we reschedule?! I've actually had my sickness be an issue multiple times and each time it makes me crumble and feel so pathetic.

THE HEALTH "CARE" SYSTEM. OHHHHH BITCH HOLD MY KOMBUCHA… yo why are you gaslighting us into not believing our pain or discomfort is real? Why is it just a phase? Why do I need to "come back when the symptoms are worse". Why will I "grow out of it"? You… the caretakers, the doctors who are supposed to see and hold space for mh illness? Why are you the very individuals continuously invalidating our deep knowing something is wrong, and just because we cannot quantify it… it doesn't exist. OOF the healthcare system is fucked. The system that dissects the body and disregards any ANY MENTION of a body in union. That the systems of our body are many but function as one. The system that turns us away when it's subtle, but want us back when we're on our knees… the system that gives us pills to sort LIFESTYLE SYSTEMIC disease.

Ok ok… I'm calm, soz guys… if you're still with me… I got a lil carried away there. Pass me back my kombucha I'll carry on.

If you look at me, my abilities are quite above average in some ways but there's a huge cost to pay and the price is the life of the average person.

There is no support package for those who are sick but not sick enough 24/7 to claim for it. Because I fluctuate.

The price I pay is embracing the fact I am an alien unsuitable for this modern world. And the blessing, the pride I hold up to the world is the fact I am an alien unsuitable for this modern world.

So let's make it better.

I grieveeee over and over and over again. How I struggle to function, how others live with ease and seem to thrive under this pressure. And yet I have an existential crisis like… how can you not SEEEEE THIS WORLD FOR IT'S SICKNESS?!

And yet I'M THE SICK ONE?!?!

I grieve my inability to keep up in some ways but then sometimes enjoy the fact I see the hungry ghost of modern day life and choose not to feed it, cause the more I give the more it drains me. And that's how I got sick in the first place.

I GRIEVEEEE my naiive mind that could blindly do silly things, eat silly foods, sleep silly hours because she was carefree but now I'm a conscious individual as part of this collective and time to time it gets heavy.

Time to time I wish I could say fuck it, and fall apart but I know too much now.

Body too sensitive, too knowing of what's good.

I GRIEVEEEE living pain free. I grieve having endless energy.

I had to swallow my pride and soften. I had to learn to ask for more help than the average person, when it looks from the outside I'm stronger than most.

I thought we were taught to be individually and independently strong right?

I grieve the fact I have this trauma to carry, to alchemise and repurpose into a superpower. I wouldn't change it for a minute… but sometimes I get sad. After the endurance of the thing itself, I'm left picking up the pieces of a pain body asking me to heal her. It's tiring.

Sometimes I get mad. What is this modern world of consumption pushing on us? Taking from us?

Why are we getting sick and tired?

Why is the world de-evolving us, when science taught us we were meant to always evolve for the better?

And here is my conclusion.

The sick are the many but the aware are the few. As we watch these numbers of waking diseased individuals grow, the systems that make us sick will crumble, and our universal spirit who wants to live softly together will emerge.

Pushing, hustling, grinding, fighting, fear, loss, attachment… sounds so aggressive and doesn't pave the way for a life of ease. Of pleasure. Of love.

We are sick because our needs are to be soft, slow, loving and kind. To live in the flow of life, not against it. To connect, to be simple and in nature. To be seasonal and sensitive. To express and create, to be playful and silly and light.

We become sick when we suppress these beautiful beautiful aspects of ourselves.

So be gentle in a world that can be harsh.

Be patient in a world that rushes.

Be kind when faced with brutality.

Be loving in the face of hate.

Be brave when confronted with fear.

Have grace when something is taken.

Stand tall as you're pulled to be less.

Be a light amidst the darkness.

Sit in fullness when the hunger strikes.

And stand firm when you're pressured to fold.

Saying no will save us all.

I have an abundance of health, mobility, agility, energy and love when I remain firmly within the boundaries that support my conditions. Which can be problematic because people generally don't take my illnesses seriously or they don't believe me, or they simply don't listen.

I have to be on my knees crying.

Because otherwise my fatigue can be met with "oh yeah I'm tired too"

Sometimes I see my "diseases" as not the thing in themselves, like some creatures I carry on my back… but actually codes. Messages. Notes from my body… a reminder to release, to rest, to nourish and not forget.

Sometimes I think my diseases are the real autonomous queen who keeps my monkey brain in check.

And my body will tell me no, when my easily influenced brain doesn't listen.

But all complaints, all grief, all pain and heartache aside…

The thing I have greatly appreciated this year is the love and support of my community. The people who get it. Who see me, who hear my illness, hold space for disease and don't try to make them sparkle.

They sit in the dark until I'm ready to crawl back out.

So… you know what the true conflict is in this modern world?

Asking for help.

When the world promotes separation.

Asking for help, when we reject holy union.

"Healing takes a village"

And so it does.

You want to heal the world? Teach the villages how to heal themselves and teach them unconditional love.

A