What stability looks like so far (1 year on meds)

I started my medication in mid 2020 after my diagnosis, and I reached the full dose I’m currently on in August 2020. Thought I’d show what my mood has been like since then, and reflect a bit on the past year.

I have been tracking my mood using the Bipolar UK mood scale and my own spreadsheet (template here).

Mood graphs

Ongoing since July 2020
Last 12 months
Last 3 months

Some reflections in no particular order

Ups and downs still happen. I have relatively long periods of a consistent neutral mood, but I still have low days (and some high ones) here and there. But they became less frequent, less severe, less long-lasting (a couple days of feeling low as opposed to a couple months), and way more manageable.

Meds take time to kick in. Although I was in a much better place when I left the hospital after a few weeks titrating meds, it took me another six months or so to reach a point where my mood was stable and where I felt in control and confident in my ability to manage it.

The first few months are scary. Coming out of a mixed episode while inpatient after a suicide attempt was scary. Wanting to be alive for the first time is scary. Every slight mood change had me worried I was about to spiral out of control again.

Intrusive suicidal thoughts took a while to go away. I still have them sometimes, but rarely. They were more common at the beginning. I didn’t want to die, but after being suicidal for over a decade, it was just my brain’s go-to thought.

It took time to know myself. I didn’t instinctively know what my healthy range of emotion is. I had to re-learn what normal sadness and normal joy looks like for me, what’s a normal reaction and what’s a warning sign of oncoming depression or hypomania.

It’s not always the bipolar disorder. I have frequent migraines (not chronic, but close) and part of the prodrome for me is a depressed mood with increased anxiety. Many of the lows in my chart are migraine-related, which is something that took me a few months to identify.

It’s not just medication. I wouldn’t be alive without medication, let alone function without it. But meds alone don’t do all the work. When my mood goes up or down, it’s a lot less severe and more manageable than it would be without meds, but it’s up to me to use coping skills to get it under control and get back up (or back down) to something neutral.

My baseline leans more towards the low side. I’m more likely to have low than high moods when I deviate from neutral. This might be the nature of my bipolar, or it might just be the nature of my life circumstances (a crappy job atmosphere, migraines, some dysphoria as I sit on a long waiting list for surgery). But it’s completely manageable.

I haven’t fully come to terms with it yet. I fact-check and research most information I come across. I’ve read about migraines, about gender dysphoria, about why bright sunlight makes me sneeze, about so many things in my life big and small. I still haven’t read much about bipolar besides self-management strategies because I’m not ready to fact-check how much of a progressive illness it might be, or how likely it may or may not be that my meds will stop being effective or that I will have another episode. But I don’t like living in ignorance, so I’m working on it.

I don’t take stability for granted. I know I’m not cured or fixed. I know I’ll live with this for the rest of my life, and I have a few decades of life ahead of me if nothing gets in the way. I track my mood, I’m self-aware of my thoughts and emotions, I take my meds, and I avoid any known triggers to the best of my ability. I know stability is not forever guaranteed, so I’m grateful for it and I try my best to maintain it.

It will be interesting to see how things go as the years go by. They might get worse at some point, but I’m confident in my ability to handle them better than I was able to in the past.

“The first step to getting better is wanting to get better”

I agree. You don’t get anywhere if you don’t want to get better. But at the same time, I think this has become a platitude that gets passed around mindlessly without really thinking about what comes after the first step.

I think it comes from good intentions, from wanting to give people a little push to have the will and the motivation to get better, maybe wanting to help them believe that getting better is something they can aim for. But when you’re in the depths of mental illness, this can feel like the burden of getting better is solely on you, like your recovery depends only on your will to recover.

I remember being told this. I remember wanting to get better, and I remember slowly losing all hope. It’s not that I didn’t want to get better, but rather, that I couldn’t get better.

The days leading up to my suicide attempt, people around me were encouraging me to get help. Call a crisis number, go to A&E, go to the GP. The last time someone said this, my reply was “you have to want to be helped in order to get help. I don’t want help. I don’t want to get better. I’m just hanging around until I decide to end it. Maybe in a year, maybe tomorrow. I’m just waiting for the day and I want to be left alone.”

And did I mean that? No. Not at all. I wanted to get better, and I desperately wanted to be helped. I was telling my GP and mental health nurse how I was feeling, I was going to A&E when I felt I was a danger to myself, I was calling the crisis number, I was using all the coping skills they suggested and none of them were working. It was the lack of appropriate help and support that led me to give up, to accept that wanting to get better wasn’t realistic, to then believe that maybe it was my own fault and maybe I just didn’t want to get better. After all, if I really wanted it, I’d be trying harder. Right? Not only was I thinking this, but it was also the message I was getting from professionals. Sometimes you stop seeking help not because you don’t want to be helped, but because no one is truly helping you.

I know the first step is to want to get better, but that in itself doesn’t get you better if you don’t have access to the resources to do so. It’s not just pure willpower that pulls you out of the symptoms of mental illness. The message is all good and well, but I think we also need more messages about what comes after the first step, and more acknowledgement that just because you have accessed help, doesn’t mean it’s actually helpful. Sometimes you don’t get better and you play a part in that, but so many times the lack of progress is mostly due to a lack of appropriate help and not a personal fault. And far too often we’re made to believe it is our own fault because we’re not trying hard enough or we’re not “truly accepting” the help we get.

I’m tired of the oversimplification of mental health and mental illness into platitudes and cutesy pictures about going for a walk and taking a bubble bath.

Life before diagnosis

Once I had a diagnosis of bipolar disorder and I achieved some mood stability, I went through a short period of mourning the past and the perceived loss of possibilities (the latter will be for a different post). It was short because I had already gone through that kind of process twice: first coming to terms with my estranged father’s suicide, and then coming to terms with being transgender.

I cannot compartmentalise my existence. There are things I did and didn’t experience because of being trans alone, or because of having bipolar disorder alone. However, most of my experiences are a muddy intersection of the two, with both also being influenced by the wider family and societal context.

Having said that, the years-long process of accepting the implications of being transgender was very much focused on that one aspect of my life. Similarly, coming to terms with my father’s suicide and my overall family situation is something I did in a very focused and also detached way. I was examining it the way one examines the plot of a movie. I was the viewer, somehow living through the storyline but not in it.

In retrospect and with the clarity of a diagnosis, I can see now that many of the things I went through internally were driven by my illness and not just life events or gender dysphoria on their own.

I got diagnosed with bipolar disorder last year at age 26 after hitting rock bottom. This will make up more than a quarter of my life if I make it to my 80s. At times it feels like wasted years.

My life before being diagnosed was characterised by long episodes of depression, hypomanic and mixed episodes, and short periods of euthymia.

During these short but stable periods, as an adult, I’d get a false sense of security thinking I wasn’t mentally ill at all. I’d convince myself things were fine and would only continue to improve. I told myself maybe things were never that bad to begin with.

It was only when a hypomanic episode arrived that I knew for sure I’d crash into depression again. When these episodes peaked, I can only describe the experience as descending into madness.

The peaceful periods in between episodes were filled with fear that they would never last. I was told this was pessimism. Some said my depression was my own fault because of this kind of thinking. I see now that it was a very realistic and accurate view, considering the very nature of this illness when untreated.

Of course, I didn’t have this bipolar-specific vocabulary of depressive and hypomanic episodes at the time. The fact that no one was diagnosing me with bipolar disorder despite my suspicions made me feel like I was just losing my mind. I eventually forgot about these suspicions.

I was never happy as a child. Gender dysphoria and a complicated family situation got in the way. I was rejected by peers, ignored or misunderstood by teachers, emotionally neglected by family.

I had my first suicidal thoughts when I was around 10, if not earlier.

As a teenager, the stable neutral periods were always obscured by life circumstances. They were different than the depressive episodes in that I didn’t feel such an overwhelming emptiness and despair, but I wasn’t happy either. I was unhappy in a ‘my life sucks’ kind of way.

For most of my teenage years I had suppressed all the gender-related feelings and thoughts I had as a child, so I was experiencing all the dysphoria without the conscious knowledge of what it was or where it was coming from. My body was uncomfortable to live in, to say the least. I started reading about astral projection; the idea of existing as a being with no physical form was freeing.

Family life was difficult for a variety of reasons since I was a child. Outside of home, most of my peers’ reactions to me ranged from harmless but clear disinterest to straight up bullying. This left me having only a couple of friends who, despite also being outcasts to an extent, weren’t as ostracized as me and eventually drifted away into broader groups of friends.

Ultimately, no one around me seemed to be going through the same turmoil I was going through, and no one showed any meaningful understanding. I found community online instead.

I spent most of my teenage years muddling my way through long depressive episodes on my own. I didn’t understand the odd periods where I felt confident, full of energy and on top of the world. I didn’t understand them because they never lasted, and because it wasn’t actual happiness given the everpresent gender dysphoria.

I continued to have passive suicidal thoughts and eventually started making plans at the age of 14, when my father completed suicide. I started self-harming soon after.

I dropped out of high school at 16. I was a good student, but my depression made it impossible to study anymore and I didn’t see the point in it regardless. My mother agreed this was best for my mental health, but offered me no help or support. In fact, she later confessed that when I was 15 she seriously considered offering to kill me to put me out of my misery.

From that age I had no friends until I started finding some community online. The few in-person friendships I had ended in part because of my mental health issues. I isolated myself. I had no idea what was wrong with me.

In the next couple of years I realised and accepted I was transgender and needed to medically transition. The perception I had of myself as a child and the relationship I had with my own body finally made sense. I began my social transition when I told my family at 18. This gave me a glimpse of hope that at least that part of my pain could get better. Despite the hope, I felt deeply ashamed of being transgender.

I returned to school when I was 20, this time in a different city only being seen and known as male. This made things easier, but I lacked all social skills and suffered through social anxiety. I hadn’t really interacted with anyone in person outside my family or doctors for four years at this point.

That first year of school went smoothly, but on the second and last year of the programme the depression hit again and I nearly ruined my chances at a scholarship abroad. I managed to make that happen.

I had an apparently bright future ahead of me, my life was only getting better as my dysphoria diminished and my living situation improved by moving to a different country. And yet, my mental health was only deteriorating more and more. This made me very frustrated. Why couldn’t I be happy when things were seemingly only getting better?

I felt lost, disoriented, helpless.

Sometimes the break in between depressive episodes would allow me to recover, but in the last few years I was so worn down it was impossible to recover. Each episode was harder than the last.

On the other hand, the hypomanic episodes made me look happy and full of energy and optimism on the outside. Inside, it was a very different experience. As an episode progressed I had less and less control. The restlessness was endless. I channelled some of that energy into my work, but sooner or later the racing thoughts and irritability would take over.

I was impulsive, talkative, oversharing. I started dating soon after moving to a new country and engaged in risky behaviours. I decided I’d start running again, setting unrealistic goals and injuring myself. I planned a holiday I didn’t have the money for, which I cancelled as the depression returned. I spent money very irresponsibly. I enrolled in university, which I gave up on within a month of starting as depression hit again.

In these episodes I didn’t feel as happy as I appeared. I felt restless, irritable, out of control.

The last mood episode I had was a mixed one. Miserable, empty, numb, restless, racing thoughts I couldn’t keep up with, anxious, angry. I felt like I was losing my mind.

At one point I truly believed my real body was in a coma from my previous suicide attempt and this was all a dream. I thought dying would wake me up. I then realised this wasn’t rational. But my mind was in such a perturbed, disturbing, incomprehensible state that I saw death as the only end to it. I did think this was rational.

I went through with it and that’s when I ended up in a psychiatric hospital, where I finally got the right diagnosis.

I could’ve had a very different life. Not even going as far as the ideal scenario where I’m born cisgender and with no mental illness; just with things as they are but having had the appropriate help and support early enough. That would’ve made a massive difference. I could’ve lived and thrived rather than just barely surviving at all times.

At the end of the day, no amount of dwelling will change what my life has been. No amount of resenting those who could’ve but didn’t help me will change things.

I am now able to see my very young past self through the lens of compassion, rather than blaming him for what he went through and thinking he deserved it. This has played an important part in finding self-acceptance. Not only did I stop resenting those who didn’t help me or even made things worse long ago, I also stopped resenting myself for not being stronger.

It could’ve been better, could’ve been worse. But it was what was.