The Medicated Curse

So, I know that this blog is mostly aimed at autism, I mean it's right in the name. But it is important to know that many of us with autism end up in similar situations to me. Where we need many types of medication to deal with our mental health. 

It is not uncommon for people on the autistic spectrum to end up struggling with their mental health. It is important to note at this point that although I may be talking in general terms, not all autistic people are the same. Much like any other group of people, we are all individuals with different likes, dislikes, feelings and opinions. 

So as I'm sure you can tell, autistic people vary, some of us have needs so high that we require 24-hour care. While others are simply just in need of a little extra understanding and support. There is even variety in the way in which we like to identify ourselves. 

Over the years the terminology has changed, and the biggest reason for this is the fact that the community is becoming more autistic-led rather than doctor-led. Today, many autistic people such as myself like to use what is called identity-first language, which is calling ourselves 'autistic' rather than 'having autism'. with that said it is important for you to use whatever language you feel is the right fit for you. 

I'm not here trying to say that every single autistic person is struggling with their mental health. But, the autism research charity, Autistica, claims that almost 8 in 10 autistic adults struggle with their mental health. And over half of those have more than one mental health diagnosis. This is significantly higher than the average for the general population. 

So, we have a group of people who are disproportionately affected when it comes to mental health. One would think that there has been significant research into this, both into why autistic people seem to have such prevalent mental health struggles, how this group of people are affected by this and the best ways to treat autistic people. But the truth is, if it wasn't for charities like Autistica we wouldn't even have any solid data on this. 

The most common way of dealing with mental health in much of the world is through the use of medication. There are a massive number of medications used for mental health issues, from anxiety to depression, psychosis to intrusive thoughts. Generally speaking, no matter the mental health struggle there is a medication to help treat that. For the most part, medication is effective and safe. 

Generally, many of these medications were invented for other things. The early mental health meds were discovered by accident and as a side effect of what the medication was originally created for. The more modern mental health meds that were created from the ground up to treat certain aspects of people's mental health can be more effective for some people and for others they are less effective. That is why we need to have both these older medications and the newer ones available for use. 

With this said, most of these medications have side effects. The truth is there are very few if any medications in the world that have been created without any side effects. In an ideal world, the doctor or prescriber would talk to the patient about these side effects and they would come to a decision as a team on how to move forward. 

But this is not the experience of myself or many of the people that I know. For many of us, it feels as if the doctors simply throw meds at us and then move on. In many situations, there are no follow-ups, no check-ins or aftercare. Simply a case of 'here, take this medication, good luck'. 

So, what is the medicated curse as I call it that spawned this entire post? Side effects, we all know that medications have side effects and these can range from tiny barely noticeable things, all the way to life-threatening complications. I have to this point managed to avoid most of the more bothersome and dangerous side effects despite the fact that I'm on a high number of medications. 

Out of all the side effects that I have had throughout my long life of taking medications is the one that I'm currently struggling with. That is the fact that I have uncontrollable weight gain. I'm not the kind of person to overeat, but as my physical condition has worsened since having covid I'm mostly unable to be active anymore. I have gained around 40% of my body weight in the last few months that I have been on antipsychotics. 

I know that in reality, this isn't the worse side effect that I have had, there have been some that were much more medically significant. Such as meds that affected my heart rate or medication that made my liver struggle. But for me, this is a massive issue, as if I can't lose the weight through exercise, and I can lose the weight through dieting. Then what is left? 

I guess I'm trying to decide if this weight gain is worth the massive improvement in my quality of life. I mean, in many ways these meds have changed my life. I can sleep, eat, and shower without feeling on edge. I can talk on the phone, use a bus, and stream without worry. I have never felt like this before. But, I know how hard the weight will be to lose and I need to decide if my weight is something that is important enough to me to stop taking the antipsychotics. 

Thanks for reading,

Spec.