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I’ve been on and off of psychiatric medications since my late teens. When I was in my mid-twenties, I decided I wanted to know who I was without the medications and quit taking them. It wasn’t until I had a major back injury when I was 40 that I went back on an SNRI, which I justified as taking for its ability to modulate pain. But I really judged the shit out of myself for ‘needing medications’ to be okay. And within two years, I decided to stop taking the medications again. I wrote a poem in September 2018 shortly after quitting meds.
My Brain is Broken
My brain is broken
I thought it was something
that could be okay
if only I did
And when things
started to go right
I tossed aside the pills
that kept me in line
And now I realize
my brain is truly broken
and it will never really
I’ll never be okay
without pills to block
all the thoughts
all the rage
all the tears
all the pain
And I don’t know
if I’ll ever be okay
with not being okay
I just wanted to be
content for once
without you judging me
I just wanted to be
wrapped up in peace
I just wanted to be okay
a substance to me
But now I know
my brain is broken
well and truly
And one day
I’ll accept my fate
I’ll be grieving
Part of my decision to quit was the stigma around mental illness. For me, it felt like I was a broken person. Like it was my fault. In the poem, I express this idea that if I was just able to do everything right, I could be okay. And the reason that I wasn’t okay with medications was due to some failings of mine. I didn’t eat right. I didn’t exercise enough. I didn’t do all of those things that all of those self help books on my bookshelf and all of those gurus in my inbox told me would give me the life that I was capable of having.
The stigma of ‘needing medications’ weighed very heavily on me. It’s easy enough to find evidence that psychiatric medications are ‘over-prescribed’ or that exercise helps reduce anxiety and depression. That dietary changes can help improve your mood. That if you can change your thoughts you can change your life. And maybe part of it was me taking things literally. Or having black and white thinking. Or my perfectionism. But to me, I had decided that taking medications was a personal weakness, and I wanted to get off of the medications as soon as possible.
I didn’t talk to my doctor about it. Partly because I felt like my doctors were pill-pushers. I wasn’t prescribed the medication by a psychiatric doctor or psychiatrist. It was a doctor who didn’t know me well at all, and didn’t take the time to have much of a discussion any time I saw her.
Eventually, I did see a psychiatric doctor who apparently specialises in adult ADHD. I wanted to know if my overwhelm and forgetfulness had to do with ADHD. But she wasn’t sure, so she added a second psychiatric medication, a non-addictive anti-anxiety medication that had some evidence for helping with ADHD symptoms. But I didn’t talk to her too often, and since I hate going to see doctors, and she didn’t push for frequent repeat visits, there was a long time for me to fall through the gaps and decide on my own what would be best for me. And I decided to quit cold turkey without telling my doctors.
I knew what I was in for, as I had stopped taking all my medications cold turkey before. And I survived the ‘brain zaps’ and mood swings, and insomnia… I was sure I could do it again. And so I did. And in looking back I am quite sure that I made things harder on myself than they had to be. But I didn’t trust any doctors to help me.
If the medications are working, my mental health improves. And when I start feeling mentally better, I start to wonder if it’s time to stop medicating. it’s often a combination of the stigma, the belief that I have ‘overcome’ anxiety or depression (because of course it’s not inherent in how my brain works – but caused by circumstances), and wanting to stop being affected by side effects that have caused me to quit.
And I am again at that crossroad. Since I started taking the same SNRI I was taking from 2016-2018, I have suffered from side effects. Initially I was super-sedated, but I seem to have acclimated to that within a few weeks. But the side effects that haven’t gone away are making me question whether this medication is right for me. Initially I could not orgasm, but after a few months, I was able to get that ability back – but it’s more difficult, and often seems ‘muted’. I also have vaginal dryness which is something that could be due to my age, but loss of estrogen doesn’t seem to be an issue for me just yet, and vaginal dryness is a known side effect of SNRI medications. Another side effect that is troublesome is the sweating. Particularly living in Australia through summer. Summer wasn’t even all that hot by the usual standards, but it seemed like any time I did anything slightly physical, I was drenched in sweat.
Within weeks of starting the medication, my food anxiety was gone. I was able to eat anything and everything. I am not a picky eater; there are a few things I avoid but generally speaking I have had a pretty diverse diet and I have always loved to eat. I’ve used food for comfort throughout my life and my weight has fluctuated greatly depending on whether I am on some sort of special diet.
It was a relief at first, to eat without worrying. To be able to choose more foods without waiting to have some sort of bad reaction. And I was thin, so I didn’t worry about gaining weight. When I did think about it, knowing that I was eating foods that would cause weight gain, I justified it by telling myself that it was just temporary, and that I would stop soon. And I kept pushing that date out. First it was after the holidays, then after school went back.
But it wasn’t until I finally stepped on the scale and saw that I had gained 20kg (44lbs) that the weight gain really computed for me. And I vowed to stop eating like crap, and for a week I stopped eating chocolate and junky foods and I did lose a bit of weight. So I kept on with this loose plan, and the next time I stepped on the scale, I saw that my weight was back up. So I got frustrated and said ‘fuck it – what’s the point?’ and the sugar and chocolate was back in my diet.
And I’ve always loved sugar and chocolate, but somehow I just seem to be seeking constant stimulation of caffeine, sugar and/or both since I have been on this medication. And it’s like a compulsion that I cannot seem to talk myself out of.
Last time I took this medication, I continued to gain weight until I quit taking it, but I thought that it could have been the hormones from the IUD I had gotten put in around the same time (and removed around the same time I quit the SNRI).
The Dreaded Cuff
Shortly after this post, ironically enough, I told my doctor I was having headaches and he decided to check my blood pressure. No real warning. I went right into panic mode so of course my blood pressure wasn’t great (a small aside… If you tend to get white coat syndrome around BP checks, ask if they can use the manual cuff. I find that it’s less intimidating). So he asked me to start checking at home twice daily for a week. Anyhow, that sparked off a conversation about how weight gain could be increasing my blood pressure. So now it wasn’t just about vanity, or about my lack of control over my eating – it was now about my heart health.
Weighing the options
So, there are definitely positives about being on the SNRI. At the time that I started it, I was in a severe state of ongoing anxiety and panic attacks. The worst state of anxiety that I’ve ever been through. As mentioned, I was afraid every time I ate. I was having multiple panic attacks every day. I had tried taking some stimulant ADHD medications, but I was so terrified that the side effects from a stimulant would kill me, that my medical anxiety was only exacerbated. I knew I needed help to get out of the state that I was in, and I was finally at the point that I was willing to go back on something for the anxiety. Part of me really wanted the doctor to just give me something like Valium or Xanax. Maybe that would be enough to break the state. But I can understand how risky that can be, and it’s not a long term solution. So finally I just asked my doctor to prescribe a medication that I had been on in the past, and found to be the most helpful of any of the long list of psych meds that I had tried in the past. The SNRI type.
I at least knew I wasn’t going to drop dead from taking it. I had to do something. I was very close to checking myself into a hospital. The anxiety was that bad.
The doctor prescribed a low dose to start with. We talked about how neurodivergent people tend to be highly sensitive to medications, so perhaps the issues with medications I had in the past had do do with being on too much. It was a big decision, but it felt like it was being made for me. I could see no other way out of the anxiety.
And it did help me out of the anxiety. I could eat again. That ‘low level’ anxiety that I accepted as my ‘functional anxiety’ subsided. The medical anxiety and OCD were much improved. I was able to gradually engage in life more and more. Yes, I still had dips in my moods, and anxiety at times. But I was no longer stuck on the couch, unable to participate in life. I was able to finally start working through some of my issues in my therapy sessions. I had the courage to start this blog. I have even made more progress than ever before on putting together a book of poetry.
I had feared ‘losing my creativity’ on medication, but I was finding that it was giving me more opportunity to carve out the solitude I needed to be creative.
I also feel like it’s helped me a lot with the overwhelm of daily life. I’ve coped better with parenting. And I’ve coped better with sensory issues. My mind isn’t as chaotic.
But, now I have to figure out whether these benefits are worth the health risks and other side effects.
A letter to myself
Even in that highly anxious state, I knew that there would come a time when I was questioning whether to stay on the medication. I didn’t know exactly what I would be questioning, but I had enough experience with medications to know that I would get to a point where I thought about quitting them.
I wanted to write a letter to myself so that I could look at it when this time came. And honestly, I haven’t looked at it until today. In fact, I am only now looking at it to type it here. So here goes:
18 August 2021
I want to remember why I started taking medication. I am in such significant breakdown. I have been struggling since November with poor mental health. Mainly anxiety. OCD. Overwhelm. And it goes from one issue to the next. Cycle keep repeating. It has amped up to the point that I am having panic attacks every day. And my mind never stops. I now know that I have ADHD but I had way too much medical anxiety to cope with stimulants so with the doctor we decided to go with a medication that I have used in the past and that I got good results from. But again – I am not coping. The slightest thing sends me into overwhelm, rage, or panic. I can’t enjoy life at all. Being around people is hard. Being alone is hard. I notice every internal sensation and obsess over it. I can’t shut out noise or motion. I am in a very dark place and have nearly given up.
I flip back through this journal for more evidence for why I need medication. I am still getting other help. Counselling. Psychology. Husband providing daily support.
But I need more help right now.
Tonight I looked over old journals to see if I had any notes about last time I started on this medication. I did not but I did have a lot of entries showing the same problems, patterns, and anxieties. Like freakishly ‘Groundhog Day’ same. So that gives me hope that where I am now is not impossible to come back from.
And this time I will be wiser about how to manage medications and actually have the right supports in managing them.
Making a wise decision
Am I wiser this time? Do I have the right supports? I think so. First, I have a doctor/psychologist who is very experienced in working with neurodivergent people. He is managing my medication. And for the first time ever, I feel like I have a practitioner who knows me well enough, and cares enough to help me make the appropriate choices with medication. He has told me (and I am paraphrasing here) that while medication is not the sole answer, neither is getting off of medication the goal. He has left the door open for me, essentially. Taken away the concern about whether taking meds is a lifelong decision. And he has helped me to understand that until I am able to work through traumas, the anxiety would always come back. But that said, he has been concerned about the side effects and we have spoken about lowering my dose soon.
I have chosen to see him regularly. Currently I see him every week, partly because I know that am I at risk of making poor choices around medications if I don’t regularly check in. It can be very tempting to think that since I am not living in a perpetual state of anxiety and have learned coping skills, that I no longer need to see him, or I no longer need to take medications.
But I want to do things differently this time. And having someone that I trust has my best interest in mind, and who thinks and behaves differently from other doctors I have seen, has made a world of difference. And having my husband’s support in this has also made a big difference. He was one of the first people to see the beauty in my ‘crazy’ and to accept me and love me as I am. But he was never a proponent of medications, and I think that I wanted to prove to him that I didn’t need them. And for a long time, maybe I didn’t. But as I became a mother and more and more things started to pile up on me, I did eventually need them. And I felt like I was letting him down by taking them so my goal was to get off of them as soon as possible. I really did know that I needed them, and allowed the doctor in America to sneak them in under the guise of pain management, but I really did feel ‘not good enough’ because I was taking them.
And the next step for me is to talk to my doctor at next week’s appointment. To share with him what I’ve shared in this post. To see how he thinks I should proceed over the next week. Because I am not making a forever decision. We can always revisit it the following week.