ECT: A Patient's Perspective

By Eric Russell

I want to begin by expressing my gratitude to Martin Baker for allowing me this opportunity to share my experience with electroconvulsive therapy (ECT). His book, High Tide, Low Tide, focuses on the intersection of mental health and relationships. So here I come down a side street to narrate my journey along the ECT path. I have bipolar disorder.

After all the medications I tried failed to calm the episodes and manage the symptoms my doctor asked if I were ready to discuss ECT. She explained that while medications have a success rate of 30-35%, ECT sees a roughly 80% efficacy rate in academic studies. However, at that moment I was too nervous to hear the favourable comparison. Although I was afraid of the unknown, my doctor convinced me to educate myself and make a fully informed decision. In the end I opted in.

As a part of the preparation my primary care physician had to sign off that I was physically healthy enough to undergo ECT. This involved both a regular physical and an EKG to get a sense of how the heart would respond. Another step in the process was to interview with two different psychiatrists. This is really for patient safety as the doctors must verify the patient has the capacity to give consent for the treatment. In my case it was my regular psychiatrist and the psychiatrist who would be administering the ECT. The double interview might seem a hassle, but governing bodies want to protect patient rights.

Although not required, I did the initial series inpatient. This was for two reasons. First, the initial series is three times a week for three or four weeks. Going inpatient meant my family didn’t have to sacrifice all those days driving back and forth. (I live two hours from the hospital.) Secondly, family was also spared taking that time off work. Consequently, I was introduced to the experience all on my own. Looking back on that time though, I can’t recall any of it other than what got written down in my journal.

It wasn’t long after getting home that I realised I had memory holes. At times I struggled to recall the names of individuals close to me, details of autobiographical events, and how to navigate once-familiar landscapes. While this can seem disconcerting, it reinforced my determination to live in the present and cherish the loved ones who surround me.

At the same time, I have learned that the memories are not actually gone. For example, one day on my way to the hospital for ECT as usual I passed the Civic Center and a flood of memories came rushing back to me. I was riding in a bicycle race which went under the Civic Center’s arches. I could see the road as it curved through a descent. I could hear the tires on the road, the shifting of gears. I could feel the breeze. The memory had come to life in my mind again, giving me a confident new attitude toward those memory holes. I can refill them.

It’s important to make clear though, ECT is not a cure-all. I still had to take medicine and continue with ECT. After the initial series my doctor scheduled me for treatments once a week. Before too long the interval was extended to every other week. Eventually, it was stretched to every fourth week, and there it stays.

On treatment days I arrive early at the ECT department’s Pre-Op staging area to make sure I don’t throw the schedule off. I’m taken to a private room to change into my pyjama bottoms and a hospital gown. We take my vitals then there’s usually a bit of a wait before a nurse comes in to start my IV so I wrap my arm in a warm blanket as this seems to make the stick easier when it’s time. That done, we go over health and health care as well as medications I’ll be given in preparation for the procedure and those I take on a regular basis. Then, after speaking with my doctor, I’m left by myself while the IV replenishes my fluids.

With the IV bag near empty the OR nurse comes to get me. After a quick visit to the lav I’m ready for the procedure. We go back and I settle in on the gurney. I meet the anaesthesiologist as staff attach all the monitor leads. As I’m filling my lungs with pure oxygen, my doctor attaches electrodes to each temple. (I get bilateral treatments. Unilateral electrode placement would be the temple and crown.) At about the same time, the anaesthesiologist lets me know the muscle relaxant and anaesthesia are flowing. From that moment when I fade into sleep it seems only seconds before the Recovery Room nurse calls my name.

It wasn’t as simple as waking up and walking away from the crushing depression, but through the dedication of my care team it did seem like an awakening in a way. I had been struggling for a long time and finally began to feel good. I did things with and for my family; I even returned to interests I’d had in the past. I had my life back.

In conclusion, as I look back over my years of electroconvulsive therapy although it is typically thought of as a treatment of last resort, I don’t feel it should be. I consider it all a small price to pay for the benefits I’ve gained and a reliable tool to keep in mind.

 

The image is a sketch I drew in 2015 while inpatient during the initial series.

 

Here We Are Again: How to Support Your Friend When Their Symptoms Return

Being there for someone who lives with illness of any kind isn’t always easy, and it can be especially hard, for you and for them, when symptoms return after a period of relative wellness or stability. (I’ve written previously here and elsewhere about managing the contrary situation, where a friend or loved one is doing well.) This is something several of my friends experience. Despite differences in their diagnoses, certain common themes keep coming up.

It helps me to remember that no matter how hard or scary things might be for me when a friend’s symptoms return, it’s far worse for the person living with it day to day.

Return or Relapse?

Some people might call this a relapse. I prefer to talk about someone finding themselves in a similar situation as before, or their symptoms appearing to have returned. Neither Fran nor I are qualified to diagnose a new episode of mania or depression, for example. That’s her clinician’s role. What I can do is pay attention to how Fran presents when I’m with her and how she describes what’s going on for her. I can discuss things with her, and help her through it as best I can.

The word relapse has a number of meanings depending on context, some of which carry connotations of moral failure, weakness, or judgment. Alongside the straightforward description of relapse as “a recurrence of symptoms of a disease after a period of improvement,” Merriam Webster offers an alternate definition, as “the act or an instance of backsliding, worsening, or subsiding.” Collins online dictionary says “[i]f a sick person relapses, their health suddenly gets worse after it had been improving.” I have no issues with that, but they offer a more judgmental alternative: “If you say that someone relapses into a way of behaving that is undesirable, you mean that they start to behave in that way again.”

Ultimately, calling it a relapse or a return of symptoms is a matter of preference. Nevertheless, the words we choose matter. Avoiding any hint of judgment is respectful and kind, not least because our friends may well be feeling guilt or shame, imagining they’ve done something wrong, or not taken enough care of themselves to prevent their symptoms returning.

What Symptoms Are We Talking About?

Not all symptoms of illness recur, but many do. Time and again, we find ourselves “back here again,” experiencing things we thought — or hoped — we’d recovered from or left behind us. These will vary from person to person. Those my friends experience include anxiety, depression, fatigue, insomnia, mania, pain, psychosis, self-harm, and suicidal thinking.

The frequency and intensity with which symptoms return varies from person to person but also from symptom to symptom and over time. Sometimes, these waves of recurrent illness overlap and exacerbate one another, as Fran describes in our book:

[it’s] amazing how i can be doing well for a while and then deteriorate so quickly for no apparent reason other than i have three illness that have a mind of their own and independently operate like sine waves..

Why Do They Keep Coming Back?

Understanding that there’s no simple or single reason for symptoms to come back helps counter the tendency to blame ourselves or our friends when they reappear.

Some conditions are inherently episodic or cyclical, such as bipolar disorder, seasonal affective disorder (SAD), or the stress and anxiety many people experience around family holidays such as Christmas or Thanksgiving. For many years, Fran experienced winter depression. She loves the potential offered by the summer months but finds the transition from spring to summer hard.

Some are situational, such as stress or anxiety related to work pressure; personal issues with family, friends, or colleagues; or other aspects of our lives and environment. We may be free of symptoms for long periods, only to have them return when the situations which trigger them present themselves again.

Symptoms may reappear as the result of changes in medication or treatment regimes, including starting or stopping a particular medication, or changing dosage. My friend and fellow mental health blogger Aimee Wilson has written about her experiences after one of her medications was inadvertently stopped by her pharmacist. Another friend experienced what appeared to be a moderately severe episode of depression. Her psychiatrist identified it as a side-effect of medication prescribed by a different doctor for an unrelated condition.

With some conditions, symptoms may return even after long periods of remission. Examples include cancer; pain from previous injury or conditions such as fibromyalgia; and fatigue, including chronic fatigue syndrome (CFS/ME). Other recurrences are random, or effectively so. These include symptoms triggered by factors outside our control or ability to anticipate or avoid. Such triggers include trauma, injury, sudden change, and the death of a family member, friend, or pet.

It’s worth noting that symptoms can arise in different ways at different times, even for the same person. In High Tide Low Tide: The Caring Friend’s Guide to Bipolar Disorder, Fran and I discuss several ways suicidal thinking presents itself for her, including relentless thinking, suicidal ideation triggered by situations and stress, and feelings of hopelessness and despair.

How Does it Feel?

Whatever their cause, nature, and intensity, when symptoms reappear it’s natural to feel low, frustrated, guilty, and even angry at being “back here again” despite all best efforts to keep ourselves safe, stable, and well.

I’m more used to helping friends handle these feelings than dealing with them myself. That said, in the past year or so I’ve had to accept that my baseline mood has shifted significantly downward, and I’m subject to recurring episodes of what I variously describe as flatness, low mood, or depression. In other words, this boy gets sad too. It’s not only my mental health. I’m currently experiencing intermittent fatigue after contracting covid a couple of months ago. It’s too early to know if this is going to persist, but it’s disconcerting to think it’s something I may need to factor into my life. The conversations I’ve had with Fran and other friends over the years about their situations are helping me feel my way forward.

What’s the Best Way to Help?

What’s the best way to help your friend handle the return of their symptoms after a period of relative wellness? The first thing I’d suggest is to encourage your friend to acknowledge what they’re feeling, whether that’s disappointment, frustration, anger, or hopelessness. Hold space for them to vent or talk about their feelings, if they want to. Acknowledge your feelings too, but avoid bringing judgment into the space you’re sharing with your friend.

Invite your friend to accept the unpleasant truth that recovery isn’t always guaranteed, may not be linear, and is often temporary. I use the word invite deliberately, because this isn’t an easy thing to accept. Fran lives with three episodic conditions — bipolar disorder, chronic fatigue syndrome (CFS/ME), and fibromyalgia. When she’s relatively well and stable, it’s hard for her — and for me — to accept that depression, mania, fatigue, and pain are almost guaranteed to reappear at some point. The only up-side I can offer when they do is that it’s equally certain the episode will not last forever. Things will change, because they always do.

It’s also true that no matter how much your friend may feel they’re “back here again,” things are not the same as on previous occasions. Their situation in life is different (not always better, but different). They have moved on from where they were last time. They have whatever lessons they’ve learned from previous episodes to help them through this one.

Our friend Julie A. Fast, author of books including Getting It Done When You’re Depressed, Take Charge of Bipolar Disorder, and Loving Someone With Bipolar Disorder, stresses the importance of treating the underlying health condition. Her mantra TREAT BIPOLAR FIRST is a reminder not to give up on whatever treatments, practices, and strategies we’ve put in place, including self-care. That doesn’t mean blindly following previous regimes if they’re no longer working. Where symptoms continue to reoccur or episodes increase in frequency or severity suggest your friend consults their clinician to see if a change in treatment is warranted.

Your friend may be reluctant to do so, especially if they’ve managed to achieve a degree of stability, because as we’ve discussed, changes in treatment can introduce new problems. These include side effects of the medication itself, and the potential to overshoot if the dose isn’t judged correctly. Fran experienced a massive overshoot from mania into depression when her medication was changed towards the end of 2011. She endured six months of debilitating depression before further changes in treatment brought a degree of stability and wellness.

Another friend who lives with bipolar disorder and chronic insomnia has had various changes to her treatment regime in the time I’ve known her. Despite often feeling frustrated and discouraged, she remains determined to explore her options in pursuit of mood stability and more healthy sleep patterns. As I remind her, this determination not to give up, and to keep moving forward is what courage looks like.

I help Fran remain vigilant for the return of symptoms, and potential trigger situations. It requires a high degree of trust and honesty. I get to share what I see in terms of Fran’s behaviour and flag any potential shifts into depression or mania to her, but it’s important not to overreact, and that I respect her take on what’s happening. That way, we each benefit from the other’s perspective. Fran gets to have a bad day (or several consecutive bad days) without it necessarily signifying she’s in depression. Likewise, she’s entitled to feel good without me raising the mania flag at the first sign of happiness. As I’ve written elsewhere:

We are both aware of the need for vigilance. Bipolar is like that. Any brightness, any momentary joy, each lifting of the curtain, is suspect, and may be the prelude to mania. But as I told Fran today: “You are doing well, and it feels wholesome to me. We will be vigilant. But don’t be scared to have a nice time, to smile, to find ease and enjoyment. These things are your right. You are worthy of them; of goodness, of living life fully.”

Sharing the responsibility for vigilance isn’t for everyone. I’ve offered to do the same for other friends and had my offer politely declined as unnecessary or inappropriate. That’s okay too.

A Final Note on Judgment and Kindness

I had a conversation recently with a friend about self-harm. My friend hasn’t self-harmed for a long time and cannot imagine herself being in that place again. Nevertheless, she said she’d never say it will never happen, only that she has developed more healthy coping strategies. I said I would never say that she — or anyone — had let themselves or me down if they self-harmed, no matter how long it had been since they last did. It wasn’t a throwaway comment on my part. It’s something I believe and know to be true.

Don’t get me wrong. I’m not immune to feelings of disappointment and judgment, but I recognise they’re profoundly unhelpful and say more about me than the person I’m thinking about. Whatever the situation, whether it’s the return of symptoms or the repeat of unhealthy behaviour, what is helpful, what is kind, is to allow my friends and loved ones to be where they are, including feeling ashamed or disappointed in themselves if that’s what they’re experiencing. That way I can be there for and with them, and help them find a way forward when they’re ready to take that step. Taking time to come to terms with what’s happening is an important part of that process. As I’ve described previously in a piece titled I Wasn’t Disappointed in You When:

I wasn’t disappointed in you. But maybe you were. And I didn’t honour that. I didn’t allow breathing space for that.

Over to You

In this article I’ve shared some of the ways I am there for my friends when they’re experiencing symptoms of illness again after a short or a long period of relative wellness. How do you feel about what I’ve shared? Does it resonate for you, or would you handle things differently? If you experience recurrent symptoms yourself, how do you handle it? What do you want and need from your friends and loved ones? How can others best help you move forward?

Fran and I would love to hear your thoughts, either in the comments below or through our contact page.

 

Photo by LinkedIn Sales Solutions at Unsplash.

 

The Ostrich Egg: My Journey to Mental Wealth

By Lea

It is only when we lose what we had that we realise just what we had. This is true in different elements of life. Sadly, this year it was true for me when it came to my Mental Wealth.

Between the ages of seven to twenty-two my Mental Wealth was lost, eaten alive and consumed by a range of people, from bullies at school, to the lack of trust shown by professionals who had the training to know better, and others. All this in addition to a rough deck of cards life had thrown my way.

Over those years, though, I was fortunate to spend a twenty-four week admission to The Crisis Recovery Unit, a specialist unit which was part of The Maudsley Hospital, which specialised in attempting to reach those for whom self-injury had become a coping mechanism.

I guess the best analogy I can make is that my body, my life, my experiences, my emotions were like an ostrich egg. The staff at the CRU chipped away slowly and methodically to break down the barriers I had put up as an act of self-protection. Once the external shell was cracked they chipped on until nothing remained of that egg. They then took the time and tenderness to build it back up, but equipped it with the skills and knowledge, not to mention self-confidence, that things can and will change, but that change has to come from within.

That was July 2001 through January 2002. For the first time my fears and my demons were not only heard, but they were held in mind whilst solutions – all of which I had to reach – were found and embraced. But this was not without many tears and setbacks as the journey to Mental Wealth began.

It worked. It lasted. Healthy coping mechanisms were adopted, psychiatry pushed to one side, a degree obtained, the loss of one of the few who gave unconditional love even whilst in my darkest of times, the birth of a child occurred, a divorce happened, a house move and more – all whilst maintaining that wealth.

But as is so often the case with these things, life had other ideas. In May of this year (2018) I was raped twice within six days by a so-called friend of over three years. He had methodically taken time to manipulate, use and lure me into a false sense of safety and trust. He had obtained power to know my buttons, how to push them and ultimately use them against me. I did the right thing and reported it to the police, but as all of this was going on the Mental Wealth I had gained rapidly disintegrated back to the crumbs and fragmented shell which the CRU had provided the skills and self-awareness to enable me to build back up.

Sanity fell. It fell like stale about-to-go-green-and-mouldy bread fed to ducks by children at the park. Any healthy ways to express emotion failed, and thirteen and a bit years of freedom and stability were lost. After caving in to self-destructions, and a psychiatric hospital stay, it is safe to say Mental Wealth was well and truly lost to the sink hole of life. Full blown Mental Illness had returned.

Last week the police informed me that they are unable to take the case forward to court due to lack of witnesses and/or CCTV, but who actually has these things when it comes to rape? A felt a sense of abandonment from the very agency which claims it is there to help and support, urging those who survive not to be silenced but with the emergence of the “Me Too” campaign to find their voice and speak their truth. I spoke mine, yet I am the one living with additional physical scars to layer on top of the mental and emotional ones he left as his legacy, whilst he walks the street continuing to spend his days oblivious to the damage and detrimental impact his actions have left behind.

In a vague attempt to self-soothe, self-manage – and self-sabotage if truth be known – self-injury has occurred once more, medical treatment obtained. The urges remain. The self-love for now is, temporarily I hope, on a shelf. I am trying to regain my grasp on it but it is hard. It is going to be a long journey to reclaim all I had.

If I know one thing it is that once this storm passes a butterfly will re-emerge. But it is hard to keep attuned to that vision when even as I write this I am in physical discomfort and pain following an episode of self-injury earlier this week which left my leg a mess. And I am mentally reliving all that he did those two days when he stole so much.

Asking for help is a hard yet brave step to take. I asked. I begged. I reached out. I cried. I screamed. Services were offered eventually but it took a breakdown to obtain a hospital stay. Services then deemed that due to their funding I had used my time and had to move on, although they acknowledged the distress I am living with on a daily basis. That was a sharp and bitter pill to swallow.

I am mindful that I am fortunate to have a private therapist trained in trauma who is enabling me to regrow and relearn and acknowledge and accept all that has occurred this year and its impact on me. After previous experience of being unreachable or untreatable by too many therapists my guard remains high. Nevertheless, she is thankfully equipped with the skills to see through the facade and get to my gut, to know what I need but may not want to hear, enabling me to try do things differently the next day.

So much has been lost, but I cling to the hope Mental Wealth will return some time soon. Until then all I can do is keep on as I am, vocalising when in distress, reaching out in the hope light will return, and pray no one else suffers in ways I have.

About the Author

Lea is a mid-thirty year old, Gender Fluid, Pansexual Solo Parent who lives in Leeds (Yorkshire, UK) and is Natural Term Breastfeeding their small who turns six in January 2019. Lea also happens to live with cPTSD, Fibromyalgia, and ME, and lost their sight a decade ago. Follow Lea’s Challenging Parenting Perceptions blog and Twitter (@leahtova).