The Secret to Living With Treatment-Resistant Depression

You’d never suspect this by listening to pharmaceutical ads, but only one-third of people with major depression get better after trying an antidepressant. The others go on to try different drugs, or combinations of medicine and psychotherapy, and usually seven in 10 achieve remission.

The other third?

They are labeled with the three most dreaded words in the mental health profession: treatment-resistant depression.

If clinical depression affects more than 15 million American adults and is predicted to be the second most common illness in the world by 2020, that’s a lot of people suffering with chronic symptoms. There are millions of people in this country who wish they had a terminal illness, an acceptable exit out of life … just getting by hour by hour.

I know this well, as I’ve struggled with treatment-resistant depression much of my life.

The last five years, in particular, I’ve been fighting death thoughts on a fairly consistent basis. I’ve tried over 20 different combinations of medicine (over 50 in the last nine years); been in therapy longer than my kids have been alive; participated in an eight-week mindfulness course at the hospital and started meditating every day; and made drastic changes to my diet—eliminating grains and dairy, sugar and caffeine.

I’ve also spent $5,000 on a functional or holistic doctor and another half of that on a cabinet full of vitamins and supplements. In the last six months, I’ve been poked with a needle and had more blood work done than a monkey with the Ebola virus, in a desperate attempt to find the underlying cause for my death wish.

The other day, when I opened a letter from Cigna, my insurance company, that said that none of the $5032 outstanding laboratory fee would be covered by them because it “does not meet the plan’s definition for medical necessary care or treatment,” I panicked, threw a few things, and called an emergency family meeting that determined this: if I had the funds of Paris Hilton I could go on testing to nail the prospective reasons for my brain pain, but since I don’t, it was time to call off all future holistic experiments and investigations.

I was left with one scary question: What if I want to die every day for the rest of my life?

That’s when I picked up Toni Bernhard’s book inspiring and courageous book, “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.” Bernhard’s advice comes from 13 years of wrestling with an acute viral infection she caught on a flight to Paris, a chronic illness that forced her to retire from her faculty position at the School of Law at the University of California, Davis. People grab for this book when, after trying a myriad of treatments over the course of several years, they finally come to ask a question similar to mine: What if I always feel this way?7902654

She gives them hope.

Not that they will find a fix somewhere down the line—there will be an end to their symptoms–but that it is possible to live a very full life in the midst of a debilitating illness.

She is proof.

In her book, she describes the four “dwelling places” of the enlightened mind that are helpful to know and to try to practice: “metta,” loving-kindness or wishing well to others and to ourselves; “karuna,” compassion or reaching out to those who are suffering, including ourselves; “mudita,” sympathetic joy or joy in the joy of others; and “upekkha,” equanimity or a mind that is at peace in all circumstances.

Bernhard’s discussion of equanimity was especially enlightening to me because so much of my suffering comes from my desire for certainty and predictability. When I pay a doctor $315 an hour, I’m expecting to leave her office less confused than when I entered. When I go through the trouble of shipping away my stool, saliva, urine, and blood samples, I am hoping, in return, for a nice chart indicating that my deficiency in X is what is causing me to Google “easiest ways to get cancer.”

Bernhard cultivates equanimity by saying, “If this medication helps, that will be great. If it doesn’t, no blame. It wasn’t what my body needed.” “If this doctor turns out to be responsive, that will be nice. If he or she doesn’t, that’s okay. Any given doctor is going to be how he or she is going to be. It’s not in my control.” As soon as she was able to let go a little, that motivated her to keep on letting go, until she experienced true freedom and serenity, even in the face of disappointment.

Somewhere in the process of reading her pages, I came to accept my illness for what it is: a sickness that has been with me since my earliest memories and one that will probably be a constant companion throughout my life. I was able to sit with the death thoughts, instead of running scared from them or obsessing about them to tears or having them make me feel like an inadequate and inferior human being. I was able to let go of my timetable and agenda for better health, my detailed wellness plan.

Ironically, the very moment I gave up on a cure, I experienced peace.

Originally published on “Sanity Break” at EverydayHealth.com.

 

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24 thoughts on “The Secret to Living With Treatment-Resistant Depression

  1. wow-what an incredible writing! I am getting the book today and so look forward to the wisdom it will offer. Acceptance is just so difficult-but when it happens it is like Forest Gump when he suddenly stops running–it is time to live again. Bless You!

  2. Therese, this is a wonderful message for those with treatment-resistant depression. I was one of them for four years, and then a wonderful thing happened. I discovered the right combination for the treatment of body, soul, and spirit and have been mostly depression free for the past four years. However, I know of people, such as yourself, who may never be free of depression no matter the combination of treatments. Bless you for your willingness to share your insights with fellow-sufferers. Your messages bring hope to those who have not benefited from medication, psychotherapy, or devoted prayer.

  3. The key words in that book’s title are “…and their caregivers.” The relationships we have are key and can also be key contributors to depression.
    Dr. Charles Raison makes and important observation in this TEDxTalk: If the cause of depression is outside of the individual and not in the brain might the cure also be outside the individual? 

    But I will also add that I don’t accept this notion of ” treatment-resistant depression.” Depression was once seen as a episodic condition until drug companies started to develop a “cure” for it.
    See Robert Whitaker’s book “Anatomy of an Epidemic.”

    Also see, https://www.youtube.com/watch?v=drv3BP0Fdi8

    IIardi wants us to understand that “Depression is a disease of civilization” Does anyone disagree?

    “Dr. Stephen Ilardi is a professor of clinical psychology and the author of The Depression Cure: The 6-Step Program to Beat Depression Without Drugs. He earned his Ph.D. in clinical psychology from Duke University in 1995, and has since served on the faculties of the University of Colorado and (presently) the University of Kansas. The author of over 40 professional articles on mental illness, Dr. Ilardi is a nationally recognized expert on depression. His work has been honored by the American Psychological Association’s prestigious Blau Award for early career contributions to the field, and his research on the neuroscience of depression has been funded by the National Institutes of Mental Health (NIMH).

      1. Hello, Theodore. I was going to leave a reply to your question. However, after reading your other posts below (dated May 21, 2015), I realized that you’re just too brilliant for me. So, I’m taking my little pearls elsewhere.

      2. For real. I have depression that is treatment resistant so far and this just makes me want to die all the more. You can’t feel okay about anything if you are constantly feeling physical pain, she is either selling something or not experiencing a truly debilitating depression.

    1. Hey Theodore. Those were both very interesting and thought provoking videos. Thanks for posting them. I almost didn’t watch them because of your comments. You didn’t express if you are having issues with depression you just kind of throw information out there like a pompous know-it-all. (not that you are, but your text comes across that way) But I figure if you are looking up videos on depression, you are probably dealing with it also. What I find very interesting is what Robert Whitaker says about most patients being better, off of medications, in the long run. That has been my experience. Medications, over time, made me much worse off. Now I understand why!! So thank you. And the TEDx talk by Raison was really interesting. Really, when you think about it, medication IS an external treatment. So why can’t there be external treatments that are more in tune with the way our bodies work rather than flooding the brain with a chemical that does a lot more than just lift the mood. Especially when your body tries to re-adjust and make less of that chemical if forced to flood its delicate brain with it constantly. I think on some level our bodies are constantly trying to combat any medications. I mean. That is why you have to keep taking higher and higher doses.
      Having said that, there are probably people out there that do great on medication and I’m definitely not encouraging them to change anything. But if medications aren’t working……maybe there is hope in external therapies…….?

  4. I absolutely loved that book. As one with incurable illnesses (7 major ones not counting my depression, etc) this book was truly one of the best I’ve read in the 19 years I’ve been ill (30 years with depression etc).

  5. RE: “depression is a disease of civilization”, I would agree to the extent that you can say the same for many illnesses we deal with (cancers, heart disease, diabetes). I for one, am tired of “formulas” for fixing my depression. I think everyone is an individual on a journey, and we all need to live our life to the best of our ability, with compassion towards ourselves and others.

    1. Re: “I would agree to the extent that you can say the same for many illnesses we deal with (cancers, heart disease, diabetes”

      The illnesses you mention are not neurological however. We might make the distinction between illness and “dis-order,” where society dictates what the “order” is and views what is outside the range of this order as “illness.” We can choice to reserve terms like “illness” for neurological diseases, where there is a medical condition, and employ the term “disorder” when treating conditions like depression.

      1. Have you had depression, or are you giving us your academic wisdom? Everyone seems to be an expert in the field, and you are just one more of them. I don’t believe depression is something outside of us. Maybe for some people it is, but for me, it was a chemical imbalance. Try as I might to lick it w/o medication, I couldn’t. It took awhile to find the right antidepressant, but I have been depression free for the past five years. I would suggest you stop thinking you have the market cornered on depression. It is an affliction not fully understood – including by you. I give you a few of your points, but to be so dogmatic and exclusionary, you are a disservice to the profession.

      2. In response to pday56201: Saying “Everyone seems to be an expert in the field” is strictly a perception which is clearly not true. But what confuses the issue is the addition of this statement, “I don’t believe depression is something outside of us,” which would have us accept that the commenter’s beliefs and limited, although personal, knowledge of the subject of depression renders their views as more valid than those of Robert Whitaker’s and Charles Raison.
        So my question then becomes, has the commenter listen to these either of these two videos?

        Some points in the of the comment are speculative in nature and I will not response to those points.

        Addressing the issue of depression “being outside of us” a bit further. The commenter seems to think that a “chemical imbalance” cannot be caused by our environment [nurture].

        There are many monozygotic twin studies that provide evidence for whether environmental can contribute to depression.
        “Twin studies reveal the absolute and relative importance of environmental and genetic influences on individuals in a sample. Twin research is considered a key tool in behavioral genetics and in content fields, from biology to psychology”
        “If one identical twin in a pair becomes depressed, the other twin will develop depression around 70-80% of the time. This is true whether or not they were both raised in the same household.

        The fact that both twins become depressed at such a high rate tells us that genes play a role in depression. But since the other twin isn’t depressed 100% of the time, we know that something else is involved too. That something else can include childhood experiences, illness, environment, learned behavior, and more.”

        1. What I’m saying Theodore, is that the folks you are citing are trying to put all depression in one box. I don’t disagree with a lot of what they say, but to indicate that a chemical imbalance can’t come about genetically is exclusionary, in my opinion. That’s the problem I have with them. There are some depressions that can be cured medically. Some are best treated by psychotherapy. And some, Like Theresa’s are treatment resistant. No one fully understands depression, not even your two experts. If you can find just one exclusion, then their theory of “everyone” falls short. I have a chemical imbalance that is successfully treated by an antidepressant. I don’t believe it came from outside me, as per your suggestion of chemicals in the environment. It came from my father. My two brothers have also suffered from depression. I’d suggest that you give a little more credit to those “experts” that go a medical route and treat chemical imbalances.

      3. Repeating the phrase “chemical imbalance” tells us very little. And I note that the commenter has supplied no references to research that might clarify their position.

        As far as a genetic cause, the commenter has overlooked research on monozygotic twin studies I’ve referred to, where the genetics are identical in the two individuals. ““If one identical twin in a pair becomes depressed, the other twin will develop depression around 70-80% of the time. This is true whether or not they were both raised in the same household.”

        One could further explore the topic of epigenetics to better understand how the environment can change gene expression.

  6. Theodore, I find your research, videos and comments valuable discussion points. But as this is a discussion board for those with personal experiences with depression, I wondered if you might speak a bit about your own personal struggle with depression and what you have found helpful. I know I access this site to hear about the day to day struggles those with depression endure and to gain a sense of community knowing I am not alone in my own struggle with the disease. I wondered if you could share your thoughts and experiences on that level, rather than academically?

  7. I haven’t watched the videos because I’m scared. Yes, I use the term scared because as has been said by a number of other members on here I am confused by the many different views that are expressed by experts or authorities. Having suffered from both serious depression and chronic anxiety and currently experiencing an 8 year period of largely unrelenting torture I just do not know who to trust. Wishing my life to be over is a daily occurrence leading me to seek inspiration, hope, courage and whatever else I need to get through the hour, the morning, afternoon and whole day. I reckon I’m not the first person to say ‘nobody is suffering as much as me’. This is something I’m not proud of and I wish it wasn’t so – I am not a selfish or unsympathetic person (that should really be I wasn’t). I honestly don’t know where you get the courage and strength to go on Therese – I’m envious, something else I’d rather not feel.

  8. Hello everyone!
    Have just signed up in the hope of learning a bit more about how to live with uncurable depression. I am very scared right now.

    All the best

    Alexander

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