On October 27th 2021, I woke up to yet another depressive episode. It was my 9th of the year. The previous 8 had been short, lasting 2-6 days each. Although that’s more frequent than I would like, it is at least manageable. Episode 9 would be different, however. It would ultimately last 37 days and force a change in my treatment. It would also be the biggest mental health challenge I had faced in 7 years.
I share this story with you for the same reason I have been an advocate for mental health and a stigmafighter since 2006.
For the same reason why in 2015 I founded the workplace mental health training company, StigmaZero.
For the same reason why in 2019 I published a book sharing my battle with bipolar disorder and the stigma that came with it.
I believe that to help others in an impactful way and to end the stigma that still surrounds mental illness, I must tell the whole story. It is equally important for me to share my challenges with my mental health as well as my successes. Mental illnesses present a life-long challenge, similar to chronic physical illnesses, and the more we talk about these experiences the more we can be prepared to face them or help others who do.
This is a story about how I responded to my longest depressive episode since 2014. I hope it can help in some way. It’s important that we keep the conversation about mental health and mental illness going, especially as we all face the effects of the ongoing pandemic.
By mid-October of 2021, I was keenly aware that 8 depressive episodes since January was more than I was willing to live with, regardless how short they were. I knew it was time to ask my psychiatrist if a change in my treatment was needed; I was just procrastinating in actually doing so.
Why did I procrastinate?
Because any change in treatment for a major mental illness can take time. It can also bring unpleasant withdrawal and/or side effects – and a new medication is far from guaranteed to work.
In short, it is a daunting task.
On October 27th, when the 9th depressive episode of 2021 hit with full force, I knew my condition wasn’t going to improve without some action. With my mental and physical energy levels near zero, I left a message asking for a phone appointment with my psychiatrist.
I have to admit that although I knew this episode was likely going to be longer, I never thought it would reach 37 days. That is a long time to have between 5% and 25% of your normal energy.
On a good day I was able to do laundry, take out the garbage and help with the dishes. The majority of days I needed to sleep for 12+ hours at night and then would lay on the couch for most of the day, utterly exhausted and unable to be productive or useful in any way. It was a terrible feeling.
When facing such challenges, we all need coping mechanisms. One of mine was watching a lot of old Law & Order episodes. There was something comforting about the familiar formula and just enough story for me to get lost in for an hour – but not so much that I couldn’t follow along given my state.
When I had the phone appointment with my psychiatrist the following week, he agreed that a change in treatment was needed. Let me take a moment to explain what treatment plan I was following and how he proposed to change it.
Ever since my diagnosis of bipolar 1 disorder in 2005, the medication lithium (a mood stabilizer that has been in use for decades) has been a pillar of my treatment plan. Having bipolar 1 disorder meant that I was prone to experiencing a wide range of states from severe mania to severe depression, and would continue to do so unless treated. At the time of my diagnosis I had already lived in that state of turmoil for years and was relieved when lithium became effective and brought my symptoms to a halt.
As of today (over a nearly 17-year span), lithium has proven 100% effective in preventing all elevated states, from mild mania (hypomania) to manic episodes. I know how fortunate I am to be able to say that and I am endlessly grateful.
Over time, however, it became clear that lithium alone could not keep the depressive symptoms at bay. From 2010 to 2013 I experienced an increasing number of depressive episodes, some of which were lasting weeks. So, in 2013 I was prescribed a second medication, this time an antidepressant called Cipralex (escitalopram).
Although it took a few months for the side effects of this new medication to become bearable, it ultimately worked as intended. The depressions stopped completely and I enjoyed a long run of several years with very few – and always very short – depressive episodes.
After years of managing my mental illness, I had become keenly aware that it can (and will often) present new challenges as we grow and our bodies evolve. But knowing I might face more depressive episodes didn’t make the challenges I faced in 2021 any easier.
So during the phone appointment, upon learning the current treatment plan of lithium + escitalopram was failing my psychiatrist advised me to add another new medication: Wellbutrin (bupropion).
While this medication was new to me, it had proven to be an effective antidepressant for many years. There was a good chance it would also be effective for me, but I had to follow a careful process before I would know for certain.
When you have bipolar 1 disorder and introduce a new antidepressant, there is always a risk that it will initiate a manic episode. (Back in 2005, that is exactly what happened to me – I was prescribed an antidepressant called Effexor and, since I was not yet taking lithium, there was nothing to stop a manic episode. That manic episode lasted 6 days with zero sleep and ultimately resulted in my admission to a psychiatric hospital.)
Since I had been taking lithium and had not experienced an elevated state in 17 years, the risk was much lower now. That said, a manic episode is a serious condition that I wanted to avoid experiencing again, so I needed to proceed cautiously. That meant starting on a low dose and watching my symptoms closely for 2 weeks.
After 2 more weeks with extremely low energy and far too much Law & Order, I had seen zero improvement. I was still very, very depressed.
On a positive note, I wasn’t experiencing any unpleasant side effects from the new medication. It appeared I was tolerating it well.
My psychiatrist then increased the dosage of the new medication and advised me to monitor my state for another 7-10 days, which is when he expected the increase to become effective. There was nothing to do but try to get through each day without falling into despair. And to sleep and rest.
As I have shared before, depression for me is not a sad, or even emotional, experience. It is more like how it feels to have the flu or to have been too active without enough food and water. There is simply not enough energy to function normally and everything shuts down. I don’t sleep and rest more out of a lack of engagement with the world – I desperately want to engage, but cannot.
For years I have used the photo above in my keynotes because it is the most accurate visual representation of what depression feels like to me. Even when my loved ones are in the act of comforting me, I feel utterly alone. I look ahead, but see no horizon. Everything is dull and washed out. Nothing feels good and I don’t feel any joy from activities – not even those I normally love to do. Food has less taste and brings no pleasure.
As with anyone who has survived a depressive episode like this, I did so with the help of many people. My wife, Anna, was everything to me. I am continually awed by her kindness, lack of judgement and incredible patience when she is thrust into the role of caregiver.
Although this was happening to me, of course it had a major impact on her as well. She effectively lost her husband and best friend for those 37 days, instead living with a ghost.
I was also very fortunate to have family members and friends provide support and show how much they cared.
And they all did so without stigma.
One of the benefits of my work to end the stigma of mental illness over the years is that everyone in my life knows about my illness – and how they can respond without stigma.
They also have a greater than average understanding of mental illness in general, as many have seen me speak and most have read my book. Below are some examples of what my support network of family and friends did – and didn’t do – that was so helpful.
- Didn’t judge me for my inability to participate in work and life events
- Checked in on me regularly to see how I was doing
- Never made me feel guilty for what I couldn’t do
- Made multiple offers to help
- Invited me on a regular basis for things like walks or phone calls, but always “when I was ready”
- Conveyed their empathy for my situation on a consistent basis
- Never trivialized what I was going through
To all who offered me empathy, kindness and support:
When it comes to illness however, even when there is zero stigma, support from others alone can’t resolve the problem. That said, meaningful and stigma-free support can make the worst part of the experience bearable. It certainly did for me.
I didn’t despair to the degree of losing hope completely or of suicidal ideation, but I certainly was feeling the pain of it all very acutely. And I was starting to wonder how long it would last – and how long I could last in that state.
That is a truly awful state of mind to be in. But I knew from experience that the only way to make it to recovery is with gritty perseverance (to withstand the pain and remain patient) and an unrelenting optimism (to maintain a clear belief that you will, indeed, recover). Many people who have faced a major illness of any kind will surely relate to that.
On December 2nd, my newest antidepressant became effective. This 37-day long, extremely difficult depressive episode, was finally over. The image below can only scratch the surface of how good it felt.
As happy as I was to finally recover, it was jarring to realize I had lost the entire month of November.
When reflecting on a depressive episode, the phrase “lost time” often comes to mind. There is really no better way to describe it – the illness simply takes over and forces you to withdraw from your life, ultimately causing you to lose the time spent in that state.
Let me take a moment to describe exactly how recovery happens for me.
It may seem odd, but every single time that I have come out of a depressive episode it has happened suddenly, like a light switch being turned on. I go to sleep in a depressive state and wake up feeling 100%, a fully healthy me again.
It can be disorienting, because suddenly having full energy after such a long period without it can feel almost like too much energy. Given the concern of me being pushed into an elevated state, I had to be careful for the first few days.
Thankfully, I avoided that particular hurdle.
After several days it was clear to me, my wife and my friends/family that I wasn’t elevated. I was just back to my normal 100% energy levels and was able to enjoy life again.
After so much time spent sleeping or resting, whatever degree of shape I was in had significantly deteriorated. The first few walks and workouts were incredibly hard! I had the energy, but was easily winded and lacked stamina. I wasn’t concerned, though, because I knew that it was only a matter of time and of me putting in the work. With energy, I was able to do that.
My second post-depression challenge had to do with a less-common side effect of the new antidepressant, which wreaked havoc on my digestive system. While unpleasant, it turned out there was an easy resolution to that problem, as well. I have now reached a point where I can take my new medication without any noticeable side effects, which is fantastic. I am keenly aware not everyone can say that.
The longest depressive episode I have experienced since 2014 ended on December 2nd, six weeks ago. Since then, I have enjoyed full mental and physical energy every day. I have also put a lot of thought into what I experienced.
That is one of the reasons I have written this story and shared it with you. As a public figure who has for years shared his story of physical and mental illness (in a published book, via inspirational keynotes, and as the instructor of StigmaZero’s online workplace mental health programs), I feel it is my responsibility to continue sharing when I experience major challenges such as this last depressive episode.
Managing a major mental illness like bipolar disorder is a lifelong endeavour – I know and accept that.
I also know that I have had a certain amount of luck and privilege along the way that has influenced my ability to successfully manage my illness. I have had a dedicated psychiatrist for 17 years, something few can claim. I have also had a partner who provided caregiver support for the vast majority of the days since my diagnosis.
These advantages are another reason I share this with you today. I sincerely hope this story can provide help to you, your colleagues and your loved ones who may face your/their own challenges.
If you know anyone who is facing similar challenges – and given the ongoing pandemic, there are more than ever – please share this story with them.
One additional resource you may find helpful is my book, Jason: 1 | Stigma: 0 – My battle with mental illness at home and in the workplace. It is just one of a great many books available on the topic, but based on reader feedback it has proven very helpful to both those facing mental illness and their caregivers. If you are interested, it is available in print, e-book and audible formats. You can learn more by clicking here.
At StigmaZero, we are passionate about our mission to help employers end the stigma of mental illness. We make it easy for you to better support your employees while increasing their performance – click here to book a meeting directly with us; we look forward to working with you!
Founder of StigmaZero, Author & Instructor of the Create Your StigmaZero Workplace Program
I founded StigmaZero to help employers address the complex and challenging reality of mental illness stigma. We offer companies an innovative solution: our Create Your StigmaZero Workplace online program, which is designed to eliminate the negative impacts that stigma can have on your culture as well as the cost of lost productivity. This program creates real, lasting impact on your company’s ability to manage mental illness and stigma.