Disorders, Syndromes, and Anniversaries

So, being ill is fun. Well it isn’t really. I was being sarcastic, but sarcasm can be hard to convey and it is the best I can come up with at the minute. My head is really fuzzy, and I am knackered, but am keen to write on. I keep waiting to get better, or for my head to be a bit clearer, or just find more time… Between finishing up my masters, getting married, and being ill, time has been harder to come by the last six months. However, I am just passing some milestones. This past September marks 6 years since I developed depression and anxiety symptoms. November marks the 6-year anniversary of my first dissociative symptoms. What better way to celebrate than to write a blog to raise awareness and share my story to encourage others.

In May I was diagnosed with a dissociative disorder (ask me about this! Took 5.5 years to get diagnosed 😛 ). It is a mental health issue where your brain struggles to communicate with your body as well as it should. It is such a headache thinking about it. Because you are your brain, but also, you are more than your brain. You are your body, but more than your body. So articulately describing what happens in a dissociative disorder is complex. All that to say, my definition isn’t pedantic 😛 Here is my best bet.
Dissociative disorders are complex mental health problems which usually arise from significant trauma in childhood, usually sexual or physical abuse as a kid (not the case for me). The colloquial way of explaining them is that because of a psychological trauma, there is a communication issue in your brain, which results in you trying to disconnect, or dissociate from reality. This dissociation can be through different ways. One way this happens is switching identities as a way to disengage with reality. This used to be called multiple personality disorder but is technically known as dissociative identity disorder (DID). Another form is dissociative amnesia (psychogenic amnesia). This is when you forget things. This could result in you forgetting your name, who you are, how you got somewhere. This could be a few hours, or a significantly longer time, like weeks/months.

The type of dissociative disorder that I have is what’s known as a depersonalization disorder. It is where I get a load of physical symptoms, that look like neurological issues, but have a psychological cause. For me, this looks like loss of sensation in most of my body, tiredness, dizziness, and other random symptoms. When I have a worse dissociative episode, things like talking or walking become extremely difficult. I feel incredible disconnected from reality. It feels like I am not me (and not in the way my philosophy degree taught me), but rather controlling me in third person, like playing FIFA or Fortnite. As much as I like these games, it isn’t a great way to be. In these times I don’t have an emotional connection to reality, it isn’t apathy or indifference, like I have felt with depression, but as if I am not aware of reality, so it can’t affect my emotions.

Screen shot from my favourite video game.  Having a depersonalization disorder can feel like controlling a character in a video game instead of your own body.

To treat this, I went on a medication called venlafaxine, which is mainly used as an antidepressant.

Now before I write on, I just want to write about how great medicine can be. Using medicine to treat mental illnesses is a complex and often challenging approach, but it can be wonderful and effective. Doctors and scientist have spent years finding ways to use medicine to treat illness, including mental illnesses. Yes. They have side effects. Yes. They might not work in the way you want/expect. But please remember that they can be wonderful tools for helping manage and treat mental illness, particularly when used in conjunction with talking therapies.

I have never really had a problem with the side effects of medicine before, but this time was rough. First of all, getting on the medicine was rough. To try to treat the dissociative disorder, we had to get on quite a high dose, which took 6 weeks to build up to. For the most part, this just took away all my energy, gave me headaches, and made me feel dissociated. For the most part, this just made working on my dissertation and doing wedding preparation more challenging (at least this is the excuse I used when my then fiancée asked me to help with the wedding).

After I was used to it, the psychiatrist said that we would need to wait 12 weeks to figure out whether the medicine was effective. For those of you keeping track, that is 18 weeks. Suffice to say, it didn’t really work. Whilst it did give me more cognitive clarity, there were too many side effects present to justify staying on the medicine.

Now, coming off medicine is tough. It can be the case for any medicine. But some medicines are over achievers and like to make leaving them extremely difficult. Anti-depressants can fall into this category. And in the antidepressant category, venlafaxine is a notoriously high achiever (top three at least). It isn’t a normal antidepressant. This is a high reaching and particularly ostentatious SNRI (Selective Norepinephrine Reuptake Inhibitor). It can be horrible to come off. I was warned that this would be the case by the psychiatrist and acknowledged it. But, as I had come off multiple antidepressants before with no issue, I wasn’t expecting much of a hassle.

Yet, the devil doesn’t play nice. To come off a high dose of venlafaxine takes a while. We had to do it over the course of 6 weeks. The first two weeks were tough. I had very little energy, lots of headaches, and felt dissociative on occasion. But I also had good days, where I could get to work. The next two weeks were similar. The couple of days after lowering a dose would be really tough, but it would even off by the end of a two-week period. This continued until I came off the medicine fully.

This is when I should introduce you to my little friend, discontinuation syndrome, or DS as I like to call him. DS is a pal who tends to show up after coming off an antidepressant as your brain and body adapt to the physiological change of the medicine stopping. Usually he hangs around for a week, or sometimes two, but is quite flaky and disappears. However, with venlafaxine being a high achiever, DS wanted to stay around. DS lasts less than two weeks most of the time, with the exception of a few medicines, which can be far longer. Venlafaxine, being a high achiever, wanted to be one of the few difficult ones, and discontinuation syndrome from venlafaxine can last up to a year.

I don’t usually say this about my friends (unless they support Manchester United), but DS has been a little slice of hell. 24 hours after stopping the medicine I was a wee bit tired. 48 hours in I had terrible headaches, was nauseous, and was feeling dizzy. 72 hours in it reminded me of having malaria, except this was far worse. I had no fever, but my head was pounding as if I did. I felt so dizzy. I wanted to take a cold shower to cool me down, but I had no fever. Also, I couldn’t stand up because of the dizziness. I could hardly sit up because of the pounding in my head. In fact, I could hardly lie down. I just lay in bed for a few days writhing in pain. Would not recommend.

After about 10 days the severity and consistency of the symptoms receded. Not to the point where I could walk up and down the stairs outside, but to the point where I could play Football Manager whilst sitting at my computer (what more could you want from life?). The simplest way I could describe my experience of the last couple of months is that I had malaria on and off for the last 6 weeks. It has been horrible. Thankfully, God healed me a bit more and my health has improved significantly over the past 10 days or so. The worst is definitely over (God willing, I hastily add).

I could go into more detail about the pain I have experienced over the past couple of months, but I don’t really want to. Partially because it can be frustrating, but mostly because my cognitive function isn’t very clear yet, and I can’t really wrap my head round it. I am so tired.
This is the first time I have written a blog post in the midst of being ill. Usually I wait for a good spell to process and reflect on my experience. I decided to get this one out of the way because I really care about the blog and want to keep it going. Hopefully this has been more coherent to the reader than it has been for me as I write it. But the reality is that life is messy and will continue to be so. Writing in the messier times is honest and authentic, which are both good things. Even if it can come at the expense of clarity.

I just want to close with some final thoughts. First of all, medicine is good. If a medical professional suggests that you try some medicine to treat a mental illness, please go for it. It doesn’t always work, but when it does it is great. The cost benefit analysis will be on the side of the medical professional. If they say try the medicine, go at it whole heartedly. I still think that we made the right decision with trying the venlafaxine. Did it work? No. Has it been tough? Yes. But using medicine to treat illness is the right thing to do. And trying was the right call.

Secondly, illness is messy, but so is all of life. We are all messed up and broken. Make sure to reach out to those who are struggling with illness (“And maybe those closest to them, too. I’ve really appreciated people asking how I am doing as well, especially when I felt my own expectations of caring were more important than paying attention to my well being.” – my wife, 2019). We all suffer and struggle through this life, so we might as well do it together.

Thirdly, thanks for reading this. It has been tough to write, both physically and emotionally. I really want to talk about mental illness more, I want to fight stigma and help others. So, thank you for reading this. Thank you if you are one of the people who have sent encouraging words to me, about this blog or otherwise. A massive thank you if you are one of the people who have prayed for, passed on, and shared this blog on social media.