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The weight of recovery

As many of you know if you have followed this website for a period of time, I am in recovery from addiction and psychosis. I have spoken extensively of my experiences from when these things were in an active state for me, but today I want to zoom in on the experience of recovery.

Recovery.

Aptly named because it is a time when you try to recover your former self, you try to recover a time before all the shit hit the fan. While a hopeful title for such a period of time, it is perhaps the hardest part of the mental health cycle.

When you start to recover, you are left with the pain you may have caused, the guilt, the shame. There are times during recovery when quite honestly it’s quite difficult to love yourself. You are left with the questions that may never be fully answered.

It is a lonely time that can weigh on your mind a great deal.

What if the damage done is irreparable? How can people trust me again? Am I worthy of the love I have received?

While the burden can be shared with others in the recovery community appropriate to you, the burden is ultimately yours. We are the ones who have to decide to make a difference, which in the case of things like addiction and psychosis can be incredibly challenging; how can I decide to get help at a time when I don’t understand how ill I am?

For many of us, all we have is the wreckage of the life we once hoped for. Taking it’s pieces and trying to rebuild.

But hope is not lost. Because we can find ourselves again. While we carry the scars of our former battles, they stand testament to our victory over the immense pain and suffering that befell us. The people that love us are there, we just have to shine a light in the dark, whatever that may look like in our life.

Please don’t lose hope. You can find yourself. You can recover what wad lost.

Although life may be different to how it was before, I promise it can be a beautiful thing. Choose to carry the weight of recovery, and emerge a stronger you.

The truth about Obssesive Compulsive Disorder – OCD

Cw: obsessive intrusive thoughts, self harm, mention of violence.

Alot of people wrongly assume that Obsessive Compulsive Disorder (OCD) is a cute tidy ‘quirk’, a need for everything to be organised and ‘just right.’

When in reality OCD is often a very disabling and harmful condition which chips away at a person’s energy levels, emotional regulation and grip on reality.

In more intense periods of OCD, people can be trapped in obsessive checking of windows and doors and whether they have turned off the oven – the safety of themselves, their home and their family can become all consuming.

Some people can take hours to do their rituals when locking up for the night or leaving the house. Sometimes leaving a room can be laden with compulsive steps which must be done entirely *right* before the person can move on.

Some people with OCD are enveloped by their need to be extremely clean and germ free. This can be very tiresome and take up the emotional and cognitive energy of the person. Compulsive cleaning can also cause medical issues due to the over use of harmful cleaning products. This can take over people’s lives making it difficult to be outside of your own low-germ household.

Consistent intrusive thoughts can also be a part of OCD. These are often interlinked with PTSD and can cause someone intrusive thoughts when awake or intrusive dreams when asleep. These thoughts can be violent and aggressive and are often the antithesis of the persons morals.

They are frightening and they make you question your own personal beliefs about yourself and others. These thoughts can be one-offs or can last for days or even weeks. They are often exacerbated by periods of high stress, hormonal changes and physical health issues.

For me they often involve self harm or the harm of others – this is a thought I have carried around with me for years, I have never and will never act of them but they are horrifying all the same.

My OCD ramped up after having my baby which is not unsual – there is a whole new person dependent on you, another person to obsessively worry over and have intrusive thoughts about.

OCD is exhausting, it is draining, it can feel humiliating and shameful. Some of the thoughts I’ve had sicken me and they don’t leave my brain. No matter how politely or forcibly I ask them. There they remain.

Intrusive thoughts and obsessive routines are really difficult to talk about publicly, people often dismiss them or they are just too painful for people to talk about. I am worried what people will think of the thoughts I have.

People with OCD routines are often ridiculed or invalidated by phrases such as ‘we all do that’ and ‘yeah, I’m a little OCD about my car being locked.’ When their struggles are so much more than that.

I find with being OCD I am often very alone in my experience and because I live up to the tidy, everything-in-its-place stereotypes I am told that my being OCD is of no surprise. People are not seeing appreciating the very real struggles those of us with OCD can have.

My OCD is not being tidy- which is more likely due to my fastidious Autistic being – its actually a very difficult and emotionally harmful thing to live with.

Some people, myself included, struggle with compulsions to self harm and sometimes those compulsions win.

OCD is real, it is intense, it can be disabling and isolating. The only way we can make it less so is to end the myths and stigma related to it.

I want to own my struggles so I can help others. I am Katie, I am OCD, I take medication for my mental health, some days I am fine and others I feel like I am losing my very soul.

See me. Support me. End the stigma, end the shame.

Guide to starting new psychiatric medication for Autistic people

This article is not intended as medical advice, please speak to your prescriber for any medical questions pertaining to medication. This article is something of a survival guide based on my own experiences, other’s experiences may differ.

Recently I started a new medication on the advice of my psychiatrist. This is the event that has acted as somewhat of a catalyst for this article.

As Autistic people, we often find ourselves taking psychiatric medication for a plethora of reasons. However, our experience of these medications is (anecdotally) often vastly different to that of our non-Autistic peers.

This bring me to my first point. Many Autistic people report having rare or paradoxical reactions to medications. Paradoxical reactions usually involve the effect or side effect being the polar opposite of that which is expected. Commonly this is seen in ADHDers with stimulants, and is in fact what underpins their use in the support of those of that particular neurotype.

However, trying to get your doctor/prescriber to understand your paradoxical reaction when it is unexpected can be very difficult. You have to be prepared to advocate for yourself. If a side effect is intolerable, do not be afraid to speak to your medic.

Something else to consider is that many of us report being very sensitive to medications, especially during the initial titration period. I personally always ask my doctors to stick to the rule “start low and go slow”. I find it helps to avoid intolerable side effects during the titration period, and allows me to better evaluate when a medication is working, and what the minimum dose I need to see a result is.

Don’t be afraid to learn about medications, but before to include your prescriber in your learning. They are the expert on medications. That said, you are the expert on yourself, so always be prepared to advocate for yourself. When starting a new medication, I tend to familiarise myself with the most common side effects, and any warning signs that I am having a dangerous reaction to the medication. After that point I will only consult the side effects leaflet if something unexpected happens. I find that this helps reduce anxiety around medication changes.

You don’t want to spend the first two weeks of titration constantly assessing yourself for every side effect, it’s exhausting.

This bring me onto my final point, starting new medications can be taxing on your spoons. Try to start medications when you have the opportunity to do nice things for yourself. Look for opportunities to rest and recuperate those spoons that you have expended. This won’t be feasible for everyone, but please do your best.

As I mentioned at the beginning, this is based on my own experiences. Yours may differ, and if you have an insight that you feel I have missed, please do feel free to drop it in the comments. We all learn from each other.

Finally, remember; sometimes medication is necessary. It’s okay to need this accomodation, and the only two people whose opinions should matter in this debate are primarily your own, but also your prescriber.

Do not allow space for the med-shamers.

Addiction advocacy and the inspiration paradox: A reflection at 6 years sober

Today I am 6 years sober from addiction. During those six years I have learnt many lessons, but in this reflection I would like to consider something that has played on my mind for the past three years of my advocacy work.

Inspiration.

While not overtly a bad thing, it is often misused to infantilise and minimise the achievements of disabled people while hiding behind a mask of feigned respect. This phenomenon is known as “inspiration porn”.

A good (hypothetical) example of such a thing would be a video of a disabled person doing something completely mundane, like dancing, but they would be dancing with a non-disabled person. The video would centre the non-disabled as some kind of saviour to the disabled person for doing something as basic as treating them like a human being. The implication of the video, albeit in subtext, would be “Look at the amazing things that disabled people can achieve when an abled person rescues them from their shameful existence”.

It’s dehumanising and wrong.

So, addiction advocacy.

As a recovering addict in the public eye, I do what I do because I want to help others overcome similar challenges to my own, and help reduce their suffering. This does in fact require inspiring people. If it weren’t for the sober addict who showed me kindness during my first stretch on a psychiatric ward, I might not have chosen recovery.

The fact that they had turned their life around, and become someone I wanted to look up to was inspiring, and that isn’t a bad thing.

What would be bad would be if people like myself are allowed to become another source of inspiration porn. It’s a difficult line to walk. I want people to have what I have found, not get off on the tragedies that have formed who I am.

Contrary to popular belief, addicts are people. We are not burdens, we don’t deserve our suffering. Regardless of whether or not we are in recovery, we deserve food, housing, health care, support, and kindness.

This is what I want to inspire in people.

So please, don’t look at me and think it’s a miracle that I recovered. My recovery shouldn’t be the inspiration. I was privileged to have a loving and supportive set of family and friends. I had good key workers (although the services they came from were woefully ill-equipped). I was in a place where I was ready to enter recovery.

What I want to inspire in you is the idea that all addicts deserve recovery. I want to inspire you to challenge the systems that keep people like me trapped in a world of suffering.

I want you to know that those with less privilege than myself need us to get in the trenches and help them fight this war.

If that is what I inspire in people, then I am happy with what I am doing. If, however, you look at me and see a walking miracle, then I have not gone far enough.

The tragedies and traumas of my life should not be celebrated. They should be wielded as weapons to dismantle the masters house, and rebuild it into something where we can all coexist and thrive.

Shifting the paradigm on world autism day

April 2nd.

It’s a day that so many of us dread. For as long as “world autism day” has existed, it is a day where (much like every other day) adherents of the pathology paradigm do their best to drown out the voices of those that proudly display their Autistic selves.

Why are we so loud about our experiences as Autistic people? It’s not because we’re trying to take away access to support services for Autistic children, as a certain type of parent will have you believe. It’s because we want to make sure that Autistic people receive support that is not only accessible, but of good quality.

But is this far enough?

Truthfully, no.

Yes, in the current world, we need access to that support. We live in a world that disables us with it’s oppressive nature. The higher your support needs, the more our world seeks to dehumanise you. Should we not be aiming higher than supporting people in a world that treats us like a phenomenon to be studied and experimented on?

Imagine, for a moment, a world where everyone is treated equally. Imagine a world where no one has privilege over another, and no group is marginalised. Imagine a world where being Autistic is no longer a medical issue that requires diagnosis.

This is the world we should be aiming for.

Sadly, societal neuronormativity makes such a world feel impossible. Even the most neurologically queer of us have been raised and indoctrinated into a type of groupthink that makes the act of queering oneself away from said normativity feel like an extreme sport

For some of us, being true to ourselves means putting our life at risk.

In order to move beyond our current society , we must do more than queer the self. We must dismantle the system in which we live and rebuild it. For the new system to work, terms like “neurotypical” and “neurodivergent” must become irrelevant. We need a societal divergence towards a new normal, one in which normal no longer exists.

For this to work, we need to move away from discussion around “disorders” and “conditions” and towards a world in which identity and culture take centre stage. A world where no one needs supporting because society works for everyone, rather than a select few.

This world autism day, we must step forward with a renewed fervour for not just the destruction of ableism, but the belief that a better world is possible. Let April 2nd 2022 be the day that we choose the neurodiversity paradigm.

Perhaps, this time next year, we can wake up to a society that’s just a little bit more accepting than the one we’re in today.

One day, trauma won’t be the collective experience of our autistic culture.

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