On anxiety disorders
Being a beginner yet again :: ORIGINALLY PUBLISHED APRIL 5th 2024
Dear soft heart,
Wow, bringing it back to 2013 today and writing a post about ANXIETY DISORDERS!
If you’re new here, I’m Emily and around the year 2007 I got diagnosed with 6 anxiety disorders: OCD, generalized anxiety disorder, panic disorder, phobias, social anxiety disorder and separation anxiety disorder. As well as something that was called ‘change adjustment disorder’. I know what you’re thinking: What a catch.
I mean, the plot line brings us to my autism diagnosis in 2020, 13 years later. BUT before that, a few years after being clinically diagnosed anxious, I would be diagnosed with C-PTSD and event PTSD and then in 2017, sensory processing disorder.
I used to key note speak on the topic of anxiety in the greater Toronto area in schools - and people used to refer to me as an ‘anxiety expert’ to which I would make an awkward joke signalling to everyone that I had no expertise except having lived a fair bit of it.
The long story short is that in 2013, I took to the internet to talk about living life with anxiety - a quite taboo thing to do over ten years ago now, and I made a career out of it.
Since I have been dealing with anxiety every single day for a very long time, I have a high tolerance for it before I start to like… sweat through my hands and feet ‘cause I’m so anxious.
I have gone through years where my anxiety was more so of a hum in the background, and less of an all encompassing thing that makes it hard to put one foot in front of the other. Those were the easier years, but overall, I can say that, like many other autistic people, being in a high state of anxiety is the norm for me. My baseline is probably someone else’s pretty heightened state of anxiety.
I would say that the hardest anxiety disorder I personally cope with at this point remains to be OCD. OCD is a tough cookie and not every therapist is trained to properly help you manage it. In fact, it’s pretty rare a therapist is specialized in OCD and even more so, in effective OCD treatment.
2020 definitely brought back my contamination OCD, but I could keep it somewhat manageable until recently. I mean, it gave people who have never lysol wiped their phone for a day in their life something to worry about, so durhhh it came back for me hard core.
I never had illness (as in virus or bacteria) contamination OCD as a kid, that waited until teenage-hood for me, but I still had contamination OCD in general, I just focused it on things like dust, hair, skin grease on the landline phone. I needed things to be perfectly clean or else I felt unsafe and afraid. I remember feeling like dead skin cells and dog hair were really out of place and it bothered me in a way it shouldn’t - like when I was at school, all I could think about were the dog hairs on the floor at home that I needed to clean up for the day and for me to feel ok. Weird concern to have as a little kid right?
I started getting illness contamination OCD when I began to be very sick in teenage-hood, thus I feared getting sicker or something else happening that mimicked the first hospital trip, or the bad side effect, or that one really bad infection (ugh I still shiver remembering a pneumonia infection) etc. I was always increasingly scared of a worse diagnosis too after my first one.
The international OCD foundation says this about what contamination obsessions can be surrounded on:
First of all, this problem breaks down into two parts contamination obsessions and decontamination compulsions. Let us first examine the nature of obsessive contamination fears. Unlike the popular view, contamination isn’t simply limited to dirt, germs, and viruses. It can also include such things as:
bodily excretions (urine, feces)
bodily fluids (sweat, saliva, mucus, tears, etc.)
blood
semen
garbage
household chemicals
radioactivity
broken glass
or sticky substances
people who appear unwell shabby or unclean
spoiled food
soap (really!)
lead
asbestos
pets
birds
dead animals
newsprint
Yep, yep, yep.
My brain is definitely naturally this way as in nature, as in I was born this way baby, buuuut I do also think my OCD would get worse when I felt unsafe in my house or when I was over stimulated or when I went through a challenge of some kind, or something changed in my life unexpectedly.
One thing that I have searched and searched the OCD world online with is the fact that trauma, big or small, always makes my OCD worse.
I was raped when I was 18, big trauma of course, and while anyone would develop event PTSD from being raped, and that for sure happened to me, I think my OCD made it way more complex, added an extra flare to it if you will, because I started experiencing profoundly intrusive thoughts that made it hard to get through the day, more intense than flashbacks or nightmares (which are still shit). I also felt like if I didn’t perform my routines and rituals, it could happen again. My routines/rituals would safe guard me from further harm - a very OCD way to operate.
Eventually, through lots of trauma resolution, therapy and time, and also at some points, medication, the OCD relaxed once more post PTSD. And when it did pop its head, managing it was something I was equipped to handle for a few years. Something I cannot say was true for me as a child, teenager and young adult.
This was until…. the last few months.
My anxiety has me sweating through the palms of my hands and feetsies, lemme tell you.
This level of anxiety came back when I started going into severe autistic burn out and getting chronic illness symptoms again sometime in the past 1-2 years - chronic insomnia, POTS, MCAS, bothersome EDS issues, resulting PEM.
Being chronically ill and disabled makes me feel fragile. I hate not feeling a sense of agency and being ill strips it from me often.
I’ve had this joke with my mom for a few weeks where I set up the scene of me being at acupuncture, laying there with so many needles in my flesh - unable to move as the muscles and nerves where I am poked start to hurt each time I do. So there I am - staring at the ceiling, lovely ceiling, trying to listen to the background music I opted into when it was offered to me, Enya plays, WHO CAN SAY WHERE THE ROAD GOESSSS, ONLY TIMEEEEE, wait could the ceiling concave right now and fall on me at any minute? Omg, okay, look outside the window, very chill, very nice window, wow beautiful tree, woah huge storm clouds, what if there is a tornado that comes right now and I die? WHAT IF MY CAR GETS STOLEN AND I NEVER GET HOME, DID I LOCK MY CAR? DID I LEAVE THE KEYS IN THE IGNITION? DID I LEAVE CANDLES ON AT HOME, WILL I RETURN TO JUST ASHES? OKAY BUT YEAH, WHAT IF SOMEONE STOLE IT AND I HAVEN’T EATEN AND I FAINT AND THEN I CAN’T WALK HOME DUE TO WEAKNESS…, okay, chill, chill chill chiiiilllll, omg what if she accidentally used these needles on the person before me and I get a disease from that?
I tell my mom that there are two kinds of people who go to acu: one kind actually relaxes and takes it as a break and usually does it as a preventative or a little seasonal boost, the other who literally thinks of all the ways they, or the people they love most, could die whilst on the table who are there because they are trying to stop taking benzo’s. I am obviously in the latter group. And then your beautiful gracious acu comes in, and says, “how’s it going?” and you have like sweat dripping down your face, and you are in the clutch of terror and you’re like suddenly in a soft calm voice as if you just came out of a light nap, acting that you are slightly disoriented, as though to signal, wow, crazy, you caught me in such a calm moment, hello there, and you say out loud, “Omg, so good, already half way done? No way, thank you so much, so relaxing. Time is just whizzing on by… amazing!”
My mom cracks up at the way my face paints itself a mask of serenity immediately, reciting these lines, the complete contrast of the inner world I revealed to her in the story. “Poor you,” she says through her loving cackle. “It’s so bad,” she’ll say as she finishes laughing. I smile now. It is really so bad.
So I am back to having very bad OCD type anxiety. My anxiety is jumping from thing to thing to fixate on and worry about every day lately, I often feel paranoid and pretty uneasy. I know it’s because I don’t feel empowered and I feel helpless with burn out and illness at the moment, my world limited in ways I would rather it not be. Illness is inherently traumatic as it is too much, often too soon, without your consent, or any element of those three things that sling you out of your window of tolerance pretty quickly, however just knowing this clearly, doesn’t make it any easier to navigate the stories my anxiety latches onto. Especially since it is being sick that inspires most of my worse case scenarios and fears at the moment. I find my mind often makes up stories based on how my body is feeling.
And so…
I am a beginner again, even though I could be considered a seasoned anxiety professional at this point, I am having to start again, humble and willing to unearth and work with my brain and nervous system once again. Our lives are spirals where we meet the same parts of ourselves again in new seasons. Do we have dinner ready for them and the fridge stocked with their favorite snacks and flowers by their bedside and fluffy towels when they arrive?
Flowers by a bedside.