I Can’t Believe He Hasn’t Left You: The Other Person Behind a Chronic Illness

aamft.orgMy husband asked me this morning how I slept.

I wasn’t sure if I should tell him the truth.

Yesterday was a bad day in a string of good days, which feels like a blizzard the first week of April. Aren’t we done with this?

By the time we connected at dinner, I had meditated three times, ran six miles, and had practiced every deep-breathing exercise I have learned in my mindfulness-based stress reduction (MBSR) course; however, my heart was still pounding with panic and my head was an ugly warzone. This is only a thought. Don’t fight the thought. Welcome the thought. The thought is not you. The thought is not reality.

Come evening, I was thoroughly exhausted.

Then I noticed Eric’s tired eyes.

There was an extra crease there that was absent the day before.

I’ve always envied him for his calm and grounded nature. Nicknamed “Baby Buddha” as a toddler, he would sit and construct Legos for hours, preparation for the blueprints he would draw later in his career as an architect. I often make the mistake of assuming he is incapable of feeling anxious, that he has Teflon insides immune to depression and worry.

“What’s the matter?” I asked.

He looked down and then up.

His hesitation answered my question.

“It’s just hard on me when you’re not doing well,” he said.

There was nothing I could think to say.

I don’t think anyone would ever fault me for a lack of trying with regard to my health. I am doing everything that I have ever read about that has potential to relieve anxiety and depression. But have yet to be cured.

“I’m so sorry,” I said.

I could tell there was more, that he was angry.

“You look fine to the outside world, so no one thinks to ask me how I’m holding up. It’s like we’re managing this chronic mystery illness that no one knows about.”

“I’m tired,” he said with wet eyes. “I’m really tired.”

It is no wonder that 90 percent of marriages where one person is bipolar ends in divorce, and that persons with bipolar disorder have three times the rate of divorce as the general public, which is about 50 percent. It’s understandable that depression would have a much greater impact on marital life than cardiac disease.

The spouse of a depressive or bipolar almost always is burdened by more than his share of jobs, responsibilities, and all things family life because pursuing good health is so time and energy-intensive on the part of the person with the illness. In our case, the hours invested are equivalent to a 40 hour full-time job if you add up all the extra grocery shopping and food preparation for a strict, brain-healthy diet, doctors’ visits, yoga, swimming, meditation, research, lab work, diagnostic tests. Then subtract the hours lost (not to mention the pay) due to sickness. This is all on top of an already stressful life of raising kids and, in some cases (like ours), helping elder parents pay their bills and such.

As he spoke, I was blindsided with guilt.

I pictured him with someone else, this attractive woman at our church who I sometimes tease him about. I was surprised that instead of jealousy, I felt relief – by the thought of no longer burdening him with all of my health issues, all of the gunk that has muddied the last 12 years of our marriage.

“I can’t believe he hasn’t left you,” a very candid person will occasionally say to me, for reasons I don’t understand.

I think about Laura.

I’m inspired by the love story of bestselling author Laura Hillenbrand and her husband, Borden. The extraordinary writer of “Seabiscuit” and “Unbroken” penned a piece about her life with Chronic Fatigue Syndrome for the New Yorker called “A Sudden Illness.” Borden had plenty of chances to leave Laura before they married. Many friends advised him to do just that. The two were college sweathearts back before she got sick at age 19. To everyone’s astonishment, he stayed by her side even as her crippling symptoms can keep her housebound for two years at a time. She was so sick she missed her own wedding reception. Yet they have somehow carved out a beautiful life together.

I was especially moved by her description of the evening that both of them got real and together confronted their painful reality:

He came into my office one night in June, sat down, and slid his chair up to me, touching his knees to mine. I looked at his face. He was still young and handsome, his hair black, his skin seamless. But the color was gone from his lips, the quickness from his eyes. He tried to smile, but the corners of his mouth wavered. He dropped his chin to his chest. He began to speak, and fourteen years of unvoiced emotions spilled out: the moment of watching the woman he loved suffer, his feelings of responsibility and helplessness and anger; his longing for children we probably couldn’t have; the endless strain of living in obedience to an extraordinarily volatile disease.

We talked for much of the night. I found myself revealing all the grief that I had hidden from him. When I asked him why he hadn’t said anything before, he said he thought I would shatter. I recognized that I had feared the same of him. In protecting each other from the awful repercussions of our misfortune, we had become strangers….

We spent a long, painful summer talking, and for both of us there were surprises. I didn’t shatter, and neither did he. I prepared myself for him to leave, but he didn’t. We became, for the first time since our days at Kenyon, alive with each other.

“How did you sleep?” Eric asked me this morning.

I hesitated.

I didn’t want him to shatter. But I didn’t want to start becoming strangers, either.

“I slept two hours,” I said. “Thanks for asking.”

Originally published on Sanity Break.

Image: www.aamft.org

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18 thoughts on “I Can’t Believe He Hasn’t Left You: The Other Person Behind a Chronic Illness

  1. That must have been very difficult (for both of you) sometimes it’s hard to know what to say to the person that is helping you through your mental health problems. It’s never our intention to bring anyone down when we talk about how we feel.

  2. You are so sweet for sharing how you feel.
    I bet you are not manipulating, lying and cussing your family and not suffering from Schadenfreude. Our daughter is insecure & envious of people regardless of how much she has or how much love she has received. We can’t believe or recognize her any longer. Do you have any advise for us. We have been to councilors & read books hoping we will find a window of hope. We want to help but all does she lies, lies, lies.
    We feel like your husband we are tired. We are older and exhausted beaten parents.

  3. Hi Therese, I’ve been reading your articles with great interest, and find myself wanting to read an overview of your story. But there isn’t much detail on your about me page. I find it both discouraging and inspiring to read about all the things that you’ve tried but still don’t seem to make a dent in your suffering. I don’t meditate, run, exercise, or restrict my diet. While I am so impressed with your resolve and determination, and the sheer strength of your will, I can’t help but think, “Why should I even bother? Look at all that she’s doing, and it’s not even helping.” That’s why it would help to know about the contributing factors that you are dealing with, like other disorders or illnesses. Did I read somewhere that you have or had a pituitary tumor? Of course I understand if you don’t want to reveal these kinds of things about yourself.

    One major reason why people read articles/blogs such as yours, is because they are looking for others who are going through a similar experience and to see how they are dealing with it. However it has occurred to me that maybe I shouldn’t identify and relate to your experience so much, since you might have many influencing health factors that I don’t know about. That’s why I’m curious as to what those are, and what makes your case so difficult.

    Of course I am just as in the dark about my treatment resistant depression. Except that there are many situational and external reasons that I can blame my depression on.

    That said, and you probably have tried this, but I thought I’d mention it anyway – hypnosis? Victoria Gallagher of Hyptalk.com has downloadable hypnosis audio sessions, including a four-session anxiety set. She’s the best that I have found in terms of voice, script, music, quality, etc. I have used her hypnosis “tapes” for sleep and energy.

    1. Lilu, I am so sorry if my story is discouraging. I guess the point that I hope to make is that no one thing has helped me, but I do enjoy moments and I feel as though my life has meaning. I do have some thyroid problems, a pituitary tumor, and probably some other stuff.I also also a recovering addict, so that plays into everything. I am not what you call happy and go lucky, but I am grateful for my life and my many blessings. I have learned how to be sick well, if that makes sense. And I feel as though my life isn’t mine anyway. It is to be of service, which does give me meaning and satisfaction.

      1. While I am kind of shocked at all that you do to help yourself, and can’t imagine ever doing that – running 8 miles, meditation/deep breathing 3 times a day, green smoothies (yuck), no wheat, no sugar, etc. I am still inspired by your immense resolve, determination, and will. In my 20’s and 30’s I did every type of holistic therapy I could find. I was reading books by spiritual authors and going to holistic fairs, before they ever openly talked about on the Oprah show. But when I saw that my negative thoughts could be obliterated with an antidepressant, I just gave up trying. It all felt so futile. I just gave up on trying to help myself.

        Reading you articles in the last week has reminded me that I need to take care of myself. All the guilt and shame that I have been feeling for the last 10 years of my life about not being “a loser” in every aspect of my life, has only caused to me to cope and distract myself in unhealthy ways. Anything to numb the pain. I was constantly shamed by those around me and my own internal guilt about the colossal failure that is my life. I took the easy way out, drowning my sorrow in hours of television, hours of surfing the web, chatting online, shopping for hours both online and in the stores, drinking alcohol, having casual sex, and eating tons of ice cream. And of course I am ashamed to even admit all that, as I feel that I have wasted years and years of my life.

        That said, after finding a good therapeutic team, I have become much more willing to once again, after 10 years, to start being an active participant in my recovery. While I am deeply saddned that you, Therese, still have to struggle with death thoughts, despite all that you do to take care of yourself, it is a HUGE REMINDER for me to start doing some of those things as well. Because the other thought it, “Wow, look at ALL she’s doing to help her condition. Look at how hard she tries to protect herself from things that exacerbate her condition. I need to start pushing myself a little more, instead of taking the easy way out, like spending hours lying on the couch watching TV.” Why is it that so many of us with depression, punish ourselves instead of being kind to our bodies and minds? Of course I also know the answer. In the words of Louise Hay, “GUILT SEEKS PUNISHMENT.” The punishment lessens the pain. It’s time to stop this nonsense. Like the nonsense of you walking around with a boulder in your shoe. It’s so sad that it’s funny. And so silly.

        Bottom line is that you have inspired me to stop being so complacent and to start taking better care of myself. Depression or not, this is a lesson that ALL of us need.

  4. Like you, I spend an inordinate amount of my days managing my mental and physical health. I have had long periods in my life where I was neither depressed nor anxious, but the past three or four years have been difficult ones for me and, finally worn out. I retired from my job a few months ago at the age of 62. I was struck by Lilu’s comment above regarding the seeming futility of much of what many of us do to try and control what seems at times utterly uncontrollable. I thought about this question frequently when reading about the death of Robin Williams — with all the resources in the world available to him and his family, he still could not find peace. And then I thought, it must have been something of a miracle that he made it to 63. So, we keep reading and exploring and fighting and hoping because, as nearly as I can determine, that is what we do.

    1. I was struck by her comment as well and didn’t want to leave her disillusioned. At the same time, I have to be honest in not finding a quick cure anywhere: either in the medication or in the holistic efforts. They all have worked a little, I think. I am mostly inspired by contributing my energy and effort into what gives me meaning, which is helping other people with depression. When I view my life as a act of service, I am lifted from the pressure of having to be “happy.” Like Victor Frankl said, happiness is a byproduct of meaningful living. Thanks, John.

      1. Therese, I don’t think there really is a quick cure. You give the best advice however, and that is just “show up,” I’ve found that it’s that first step that’s so difficult yet so immensely important. You keep “showing up” by your posts and blogs, and I keep reading. Bless you and your family, and thank you again.

        Karen

  5. One more thing… You said, “my heart was still pounding with panic and my head was an ugly warzone. This is only a thought. Don’t fight the thought. Welcome the thought. The thought is not you. The thought is not reality.”
    Having studied lots of metaphysical teachings, despite the words, I feel that there is still a lot of resistance there in feeling the reality that you are in with full acceptance and without judgement. When we feel something that is causing us distress, we are wired to resist it. It is the law of self-preservation. But what I’ve learned from spiritual teachers is this: You have to be willing, even for one minute to fully experience the reality that is in front of you, WITHOUT ANY RESISTANCE what’s so ever. I’ve learned that the only way out, is through.

    The key to mustering the willingness to experience something we’d rather not, is pure unadulterated CURIOSITY. Yes, this is not easy, but what I have found is that my fear and false beliefs, which generate the resistance and anxiety, create the perception of that which I am resisting, as being far worse than it really is. Just like the stone in your shoe, once you stopped resisting the pain, and decided to INVESTIGATE, you saw that this was only a stone in a shoe. This is in reference to the following post: http://thereseborchardblog.com/2014/09/02/do-you-want-to-be-depressed/
    PS I’m sure you’ve heard it all, so I apologize if I’m preaching to the choir.

  6. Once again it feels as if you wrote this article specifically for me. Thanks so much for your willingness to share your struggles and insights. It helps to know I’m not alone.

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