I’m not okay, but that’s okay?

CW burn-out, depression, self-harm, chronic pain, menstruation

You may be wondering what I mean with my title. I’ll do my best to explain this.

Thing is, I haven’t been doing too well lately. And that’s okay. By okay, I don’t mean I deserve to not be okay. I just mean that suffering is not a taboo.

I won’t bore you with too many details, because I’m honestly too tired to do so. My main problems right now are:

  • autistic burn-out
  • depression
  • chronic pain

For five years now, I’ve worked my ass off every year, only to be hit by a metaphorical brick and spiral down into depression.

For five years, I’ve had minor ups and major downs in both my mental and physical health.

For five years, I’ve had menstrual problems that cause pain and discomfort to a degree that can’t be marked as normal.

And for these five, I’ve sought treatment. I received treatment, but never effectively.

Because each year, the problems return.

Around the time my annual burn-out kicks in, my chronic abdominal pain returns as well, paired with muscle pain and basically a bunch of problems in the belly-region.

It’s hard not to get depressed when this happens, because when burn-out hits, your body asks you to calm the f down. Yet society tells you to keep the f going.

So I did, and still do. Until I hit my breaking point and become suicidal.

I never self-harmed, until I first did last year. This year, I did it again and went further than last year.

I don’t want to, obviously. But the treatment I’ve received so far never helped me.

I’ve had Cognitive Behavioral Therapy twice and am on anti-depressants, as well as anti-psychotics to sleep.

I’ve tried several types of hormonal contraceptives and they’ve done nothing to relieve my pain.

I’m currently on beta-blockers to help manage my stress, and found out the hard way that I can’t combine these with ibuprofen, which I use to treat my pain symptoms. I got trouble breathing and eventually even struggled with immense chest pain.

Right now, I’m taking care of the family dog in order to get outside and have good company. My boyfriend is good company too, obviously. But I mean… dogs, you know?

Anyway, my new gynaecologist thinks I may have endometriosis, which can only truly be confirmed with surgery. Considering he’s not the third doctor to tell me this, I wouldn’t mind the surgery, if it means they can confirm their diagnosis (or not).

As for my mental problems, my new psychiatrist thinks I may be bipolar and may have anxiety. I was diagnosed with social anxiety as a kid and self-diagnosed afterward, so there’s no question in that. But appearantly, having an official diagnosis means the current dosage of my medication could be highered, which my can’t be done without a diagnosis.

The problem with bipolar disorder is that it’s treated differently than depression, as it has both episodes of either mania or hypomania and depression. I probably have hypomania, or periods in which I am more productive and have less need for sleep and such. Now, the problem is that with BD, you can’t only treat the depressive episodes. You have to treat the manic or hypomanic episodes as well.

I was never officially diagnosed with depression. The only official diagnosis I’ve had for about four years now is Autism Spectrum Disorder. All the psychiatrists I’ve had so far were convinced that my depression- and anxiety problems are related to the fact that I ‘have autism’.

They didn’t seem to realize that being autistic isn’t my problem. As my new psychiatrist said:

Autistic people are people too, so they’re just as likely to have mental problems, to have mental disorders and ilnesses, as non-autistic people

I knew I’d found the right person the moment he said this, because so far every single psychiatrist and psychologist said that ASD was the source of all my problems and that I didn’t have any other illnesses or disorders.

I’m not entirely comfortable calling autism a disorder, though. I do call it a disability myself, but a disorder makes it seem as if everything about being autistic is wrong.

If I weren’t autistic, I wouldn’t be as loyal, creative and empathic as I am now. But people seem to hate my communicative skills and sensory differences so much, that they see ‘my autism’ as a disorder.

Back to my diagnoses, I’m going to look at medication and other types of treatment with my new psychiatrist and will try to convince my new gynaecologist to have a look inside to see if I truly have endometriosis.

And while I’m glad to be taken seriously, I’m also very scared. I’m scared, because I know that being both autistic and bipolar will cause confusion with many traditional mental health care professionals. My own psychologist has been confused with me since the beginning and still can’t listen to my words without forming them to fit her own framework somehow. Caretakers are either specialized in autism or in bipolar disorder, not both.

Then there’s endometriosis… which is usually treated with contraceptives. These don’t work for me, so the only other option would be to have some of the problem areas surgically cleaned of the endometriosis.

The one thing I need most now is clarity. I need to know what will happen next. I need to know I will receive different treatment.

But mostly, I just want to be able to rest and not worry about potentially harming myself. Because I’m autistic, the mental health industry is very reluctant to admit me into one of their clinics. They say this is in fear of overstimulation, but I worry it’s more than just that.

Hopefully, I can convince them to admit me temporarily, because right now, my boyfriend and parents are tasked with taking care of me. But they can’t watch me 24/7 and they aren’t trained to protect me from myself if necessary. It’s straining on them to have to do this when the professionals who are trained and paid to do this kind of thing are right the f there.

Even if I don’t get admitted, I am working on changing my situation myself. Besides dogsitting, I’m also actively seaking new housing, as I currently have a room with two housemates that’s quite expensive. I’m forced to spend most of my time at my boyfriend’s room, and have been on a list for a similar room to his for a year. It could take another year or two before I get a room, though. And by that time, we may want to move in together outside of student housing.

To fix this problem, I’m looking into urgency matters, meaning that my psychiatrist may be able to help me fill in a form that could get me a room within a few months instead of years. This would be ideal.

As for caretakers… I’ve had bad experiences with those. I was in supported autistic student housing last year, and I had no privacy whatsoever. My caretakers were trained in a way that clashed with how I worked, forcing me to let go of any independence I had. Because I’m quite independent. I’m just the kind of person who has to figure things out herself. One of those things is planning, and another is the fact that mindfulness and meditation don’t work for me at all.

But my caretakers… they didn’t really listen to me. They were just like my psychologist, doing what they thought was best for me. And I appreciate what they did for me, but I don’t appreciate the lack of privacy I had, and the lack of independence.

I can fully understand that these caretakers may help other people greatly. My housemates seemed fine with them. They just weren’t great fits for me, and I’m not sure I want to look for better caretakers.

Lastly, I wish I could get a pet dog or pet bird myself. But my current room doesn’t allow pets (my boyfriend’s does, which is where my dog and I are at). I’ve always been good at taking care of pets, but when you have trouble getting groceries and taking showers, people seem to think you can’t take care of an animal or of other people, for that matter.

They don’t seem to realize it’s easier for me to take care of others than to take care of myself. I still cook for my boyfriend, although less than before. I fixed an audio problem on his laptop, even. I can easily do things for others. It just gets difficult when I have to do things for me, because of intrusive thoughts and what not.

Hope this isn’t too long. The good news is that I can probably pass the first year of my bachelor’s in Archaeology and continue next year, despite my burn-out and everything that followed.

I wasn’t so lucky last year.

Now, I need to figure out how to get out of this state of physical and mental pain, and how to make sure next year will be better than this year.

Looking back, this year was better than last year. So I should be able to make next year even better.

I’ll be turning 20 in June, which I find hard to believe.

I never wanted to reach the age of 16, nor 18, and now I’m nearly 20.

I’ve come far, but I still have a long way to go. I just hope the road will become less bumpy for me.

All I want is to live a life of less suffering, and to reach a state of content. I want to become an Archaeologist. I want to be happy one day, or at least get rid of my annual deathwish.

That shouldn’t be too much to ask, right?

Take care,

Rachel

P.S. I won’t be very active on social media for a while

2 thoughts on “I’m not okay, but that’s okay?

  1. I’m glad I found your blog after Ieft Twitter. I hope your new psychiatrist understands you better.

    Say hi to Mylo and your boyfriend for me!

    Like

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