Existing Via Tolerance

Existing via Tolerance is how I describe living with neurodivergency, chronic health issues, depersonalisation/derealisation and chronic suicidality. I think many people, with different chronic illnesses or mental health can relate to the fact that each task that takes one step for a healthy, neurotypical, mentally stable person, takes 3–6, and with that comes exhaustion, fatigue, pain and struggles. I'm told to accept and embrace my differences, but how can I possibly do that when every step takes the breathe out of me? Every action is a distraction? And every second an intrusive thought is playing like a quiet piano melody in the back of my head?

These are questions I get asked a lot when people realise the struggles I go through, while persisting and trying my hardest to 'live'. I ask them to myself too.

My biggest struggle, the one which feels impossible to surmount, overcome or solve, is my depersonalisation / derealisation which comes from my C-PTS(D). I find everyday a mixture of not feeling like I'm me and that the body I inhabit (if I inhabit it, and not feeling like I'm quite literally floating outside of it), is not my own (depersonalisation), crossed with feeling like the world around me does not exist, is a dream, or I'm in a coma (derealisation). Most doctors would write it down as a feeling of 'emptiness', but it feels like more (or I guess, less) than that. It doesn't feel at all. It isn't an emptiness of a container within me, it's as if there is no container to fill in the first place.

With this comes many intrusive thoughts, those of self-harm, suicide and escapism. When exploring these thoughts further, they boil down to a question playing over and over in my head, 'is it worth living like this'? Is it worth, say, tolerating it?

Over the years, I have found ways to reduce the feeling of derealisation. Nature and activism being the primary coping strategies. Nature grounds me, it makes me realise that the world is alive, vibrant, full of things and beings, that are filled with an energy that my body also possesses. That ever burning fire, energy, the sun, feeding the plants, producing an edible energy source for various other things to digest and turn into its own energy. That is me too. Activism works in parallel. It helps me connect with my values, the things that I deem the utmost importance to fight for — our human rights, the needs of every thing on this planet. Plants, humans, animals and our land and sea.

However, the depersonalisation is still there. I still am not me. I am not the one doing those things. As if I am far away, observing another doing these actions on behalf, or autonomously of me. This is where the brick wall is. The thing I have to tolerate and what is questioned when asking myself, 'is it worth it?'

I find a feedback loop at this barrier, when seeking the current, present cause, it's a dead end. Sure, I can name the specific traumas that caused it, and I can understand the neural pathways that have formed over many years to bring me here, but in contrast, I have done many years of trauma therapy, tried many prescribed drugs, even ECT, and I don't have flashbacks anymore. I overcome my social anxiety to now be a public speaker, I'm no longer thinking that everyone secretly hates me, and I can deal with incredibly stressful events without falling into a dysregulated mess. But yet, no budging in this feeling of utter unrealness.

It is at this point I have a choice. To tolerate it, or to escape it. And that it is a hard, hard choice. It is a choice millions make each day. Over my lifetime, I have had to have many, many hospital admissions for my mental health and the medical consequences of my actions to escape it. Sometimes I think, I cannot do this, I cannot take any more of this and that it is not worth accepting it. I see people in their old age, who are very clearly mentally unwell, depressed, but just keep going with anger and sadness; and I do not want to be that. I want to be happy. I want to feel. Yet, it is an ever growing realisation that maybe that is not possible for me. Maybe I, like many others, will have this condition, or similar, lifelong. And that is a hard realisation to make.

That realisation is scary. That is where I am now. I do not know where to go from here.

But, I do know there are things I want to live for. I continue to do things that spark something in me, and that is what I am aiming to continue doing while I continue to figure this all out. Hopefully, one day, I will feel a bit more real, but in the meantime, I will aim for tolerance.