A Forever-Kind of Illness

forever illnessI overhead my husband describing my health to someone on the phone the other day.

“She’s definitely better,” he said.

“She’s trying a lot of new things. It’s hard to say what’s helping the most.”

“Well, she’ll always have it. I mean, it will never go away completely. But she’s able to manage her symptoms as of late. She’s able to get out of bed in the morning and go to work.”

Wow, I thought to myself, he gets it.

He truly gets it.

In some ways, he accepted the enduring nature of my illness long before I did.

I’m an easy sell—dangerously gullible–so when I hear commercials for new drugs promise an end to death thoughts, fatigue, apathy, and anxiety, I believe them, much like I believed in Santa Claus until my mean cousin made fun of me because I was way past the age to have not figured out it was Uncle Steve who was donning a white beard and ho ho ho-ing between his martinis.

When I decided to go the holistic route, I’d read profile after profile in diet and health books about people who were on four kinds of medication to treat their bipolar disorder, but once they eliminated gluten and dairy from their diet (and added fish oil supplements, a probiotic, Vitamin B 12), they could ditch the meds and enjoy a happily-ever-after life.

Then there was reality, which fails to produce sexy sound bites.

It’s hard to finally swallow the fact that treatment-resistant depression, bipolar disorder, and other severe mood disorders can be lifelong companions because the bulk of health literature focuses on easy cures. Our media won’t promote any message that is complicated or messy, anything short of the quick fix. As Toni Bernhard, author of “How To Be Sick” says, “Our culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted—the bias is often implicit or unconscious, but it is nonetheless palpable.”

I’m just as guilty as the person who hasn’t been fighting symptoms her whole life.

Yesterday I ran into a friend and her husband at church, and the husband told me that his daughter was bipolar and has tried to commit suicide three times.

“Does she have a good doctor?” I asked.

“Oh yeah,” my friend said, “she’s at the University of Virginia.”

Why did I ask about her doctor?

Because it’s easier for me to hear that a person who tried to take her life three times doesn’t have the right care. If she has a top notch medical team and is still suicidal? That means her illness—which is my illness–is that much harder to treat. It’s serious stuff.

I felt lucky to be having a day without symptoms.

I’m even luckier to have had a string of 13 symptom-free days, as documented in my mood journal.

The difficult truth for many of us with chronic mood conditions is that, while we can experience glorious remissions, we’re never cured. Much like the cancer patient, we need to rearrange our entire lives so that the most important thing we do each day is to stay in remission (if we aren’t depressed) or to aim for remission (if we are depressed). We are always on call for the surprise visits from our illness and can never relax to the point of forgetting we are sick.

I have learned from members of Group Beyond Blue, the online depression support group I moderate, that this kind of vigilance doesn’t have to absorb the spills of joy from your life. If you know that everything is transient—the depressive episodes and the remissions—you are better able to welcome each. As Buddhist teacher and author Pema Chödrön explains, the healing happens in the movement between emotional states or in the natural cycle of our moods. She writes:

We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.

I posted that quote on my Facebook page awhile back, and a woman disagreed with it. She was bipolar and said that her medication combination has provided her a newfound stability.

I congratulated her.

Part of me envied her.

I do better with lines than with circles.

But my recovery is still very much a work in progress.

Just ask my husband.

Artwork by the talented Anya Getter.

Originally published on Sanity Break.

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9 thoughts on “A Forever-Kind of Illness

  1. I think it’s a major accomplishment, when we accept our illness – We don’t have to like it, but accepting it is a huge step in accepting ourselves.

  2. I agree, Margaret, and I would add that forgiving ourselves for believing at one time or another, that it is or fault somehow. I made huge mistakes and still do….sometimes it is just poor choice making, but other times, it’s the illness manifesting. And that’s not my fault.

  3. Great article,it is a blessing when you have someone in your life that “gets your mental illness. Group Beyond Blue, the on line support group is awesome even though they are” strangers” they all get it and become like your family. God Bless You, Therese

  4. Dear Therese,

    You have become my new best friend. I was lost. Searching everywhere, in books, in church, with prayer, in a huge amount of toxic relationships, in counselors, in alcohol, and other myriads of horrible decisions trying to get relief…..from what, I wasn’t sure. I knew I felt depressed and less than a human being from very young until present. I felt different than any person I knew and found no one who understood me ,or those who tried, ran like hell after a very brief period of time as my rollercoaster of moods were too much for them to continue on the ride. My mental illness presented itself to me at age 5, on the first day of Kindergarten and lasted until I was 12, at least the acute part of the illness lasted that long, but the less subtle effects have lasted a lifetime. I was diagnosed with Selective Mutism. I have had a number of other traumas throughout my life as I’m now the ripe old age of 45. At this time I don’t want to delve into the depth of these traumas and mood disorders. I have also have had a few successes such as my career, kids, social but there is always that voice in my head that tries and has been successful in sabotaging the positives. I just wanted to thank you for your honesty, for reaching out and telling your story. I first saw your blog on Belief.net . I have since been reading your posts on others sites as well. Our experiences are so similar I feel we could be soul sisters of the “black hole”. However, for the first time, I feel that I have come home. I’m not lost and finally I can have a circle of friends who just may hang in there with me and so I no longer have to hide out in the safety of my home because I have lost all ability to form a relationship with other women in the community as i feel I’m not good enough, that I’m socially awkward and/or may scare them away because of my extreme moodiness. There are people out there just like me and I’m not just crazy. That there is a reason for my behaviors and not that I am just a bad, sinful, person “that just needs to grow up”.(I was brought up in a strict WELS Lutheran society including attending K-12 parochial school. If that alone doesn’t mess with your psyche…) Your posts have given me hope and less days that I am focused on my own “death thoughts”. You are my angel of understanding and my source of peace.

    Thank you, Heather

  5. Therese,
    Thank you, again, for another insightful and encouraging article. I like to think of them more as personal letters to your many, many devoted followers, especially since your recent post of your actual letter to your close friend.

    Please pardon my abruptness, but in this current letter, you seem to unfairly judge yourself “gullible” for trying each of the latest treatments. I submit that another valid interpretation might describe you as proactively, persistently, and aggressively seeking new remedies, earnestly hoping for relief. The so-called experts, with all due respect, seem to rely too blindly on the same trial and error method, often experimenting on us with the latest new drug. How often do they truly, medically analyze our genetic, biological, chemical, and neurological make up and strategically match that with the drug and other treatment elements? Just a thought.

  6. Is this group still active. Please say yes. These articles have spoken to me. I really hope 2014 or 2016 wasn’t the end. I need help and I can’t get it in the medical community and I’m trying everything. Everything to save my own life from this depression. Is anyone out there?

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