Grief is Not A Disorder

 You may never have heard of the Diagnostic and Statistical Manual of Mental Disorders, the American Psychiatric Association’s diagnostic guidebook. The fifth edition is currently in draft form and scheduled for publication in May. It was first issued in 1952 and the fifth edition will be the first update since 2000. (When I was a mental health worker in the 1980s, DSM-III was being used.)

DSM-5 has been in the news recently because of the way it plans to reclassify grief.  Previous versions of the manual have excluded grief as a depressive condition. Meaning if you went to your doctor and reported feelings of deep sadness and loss, insomnia, inability to concentrate or loss of appetite that lasted longer than two weeks, your doctor would find out if you had lost someone close to you. 

Sure, your doctor might have prescribed something to help you sleep. My dad’s doctor did for him after my mom died. But by making grief an extenuating circumstance in diagnostic terms, the manual signified grief as a normal part of life. No more, if DSM-5 proceeds without further edits. You could very well be diagnosed as depressed for having a completely normal response to a loss, and prescribed antidepressants when the best healing agent is simply time.

If there’s one thing I’ve learned about grief, it’s that it’s not linear. It won’t be resolved in two or three or six months, much less two weeks. The respected medical journal The Lancet said it beautifully. “Building a life without the loved person who died cannot be expected to be quick, easy, or straightforward. Life cannot, nor should not, continue as normal. In a sense, a new life has to be created, and lived with.”

I trust doctors will continue to use their common sense, no matter what the final DSM-5 looks like. But as Allen Frances, M.D., wrote in Psychology Today, “If DSM-5  remains completely tone deaf and intransigent, it simply will not be used.”

Grief is a part of life, like love or joy or pain. It is not a disorder, and treating it as though it were is a big mistake.

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Reverting to Form

I’m a fraud. Well, not in the sense of identity theft or anything like that. But for the past several months I’ve been worried that something’s wrong with me and I haven’t shared it with this wonderful online community I’ve found. Some of my online buddies have shared their fears of an upcoming oncology visit or blood test, and I’ve thought of reaching out the same way, but I can’t bring myself to do it.

I didn’t reach out to many people offline either. My wonderful surgeon asked how I was when I popped in to invite him to a wine event fundraiser three months ago. And if there’s one thing I’ve learned, it’s when a doctor asks how you’re doing, it isn’t just small talk. He or she really wants to know. But online and off, I kept my fears largely to myself.

What happened was my platelets were heading in the wrong direction in September and December, and as much as my oncologist and family doctor told me not to worry, I couldn’t completely banish it from my head. I have often said that telling us how we should feel about our diagnosis is like telling us we should be six feet tall or have brown eyes. The same thing can apply to worrying. Some of us are just wired that way, although there are things we can do to ease it.

I did my best to stay offline and not let my cyberchondriac tendencies get the best of me, but I didn’t like it one bit that my oncologist bumped me up from my regular six-month checkup to four months. I didn’t like it that I wasn’t acing my blood work, and I hated it that there was nothing I could do about it.

Somewhere in the middle of all this stewing, I realized I was handling this the same way I handled my DCIS diagnosis four years ago. I told very few people while my head was churning and I was trying to figure out what to do.

I wasn’t on social media then, but now I realize it probably wouldn’t have made a difference. As open as I like to think I am, I’m still private in a lot of ways. I still have trouble admitting when I’m scared. I’m more comfortable talking about certain things when they’re in the rear-view mirror. I say supportive things to others dealing with their particular brand of medical misery, and I mean them, but I have one hell of a time taking my own advice.

I’m not sure what point I’m even trying to make with this, other than to let you know that the way we act online isn’t so different from the way we act offline. And don’t be surprised if you also find yourself reverting to form when faced with another challenge, or as in my case, a what-if scenario.

There’s nothing wrong with me, by the way. My platelets are back to normal. I’m back to checkups every six months. I’ll have to find something else to worry about for now.

Remembering Rachel

She was curious about Nebraska winters.

I was curious about Australian food.

She held Komen’s feet to the fire with her laser intelligence and professional accounting skills. Her brilliant “Komen by the Numbers” post, now two years old and the first in a series, is still being shared and will be for a long time.

I gave Komen the benefit of the doubt for far too long. Rachel did more than anyone to open my eyes to Komen as a brand.

She invited me to be her friend on Facebook. I don’t do friends on FB. But such is Rachel’s power that I couldn’t say no. When I told her that in a message, she wrote “Hahahaha. . I’m so honored to have made the cut Jacks!” (Jacks was her nickname for me. She told me Aussies are big on nicknames. I never got over being thrilled when she called me that.)

Her personal Facebook page is down now but I can’t bring myself to unfriend her, just as we can’t bring ourselves to remove @ccchronicles from our group #FFs and sherpa hugs on Twitter. We’re not ready.

I worried when her tweets slowed down and was thrilled when she was able to join the #bcsm tweetchats in spite of massive fatigue and loss of her writing/typing hand. She would sign off, “Good night, John Boy.”

I thought of her when the engineering firm I work for hired a new Australian operations director, and I posted a picture of the Australian flag on our company Facebook page.

I will think of her wickedly funny tweets whenever I’m in my oncologist’s waiting room. I tweeted in her honor on my Wednesday visit, fighting the urge to laugh at the valentines parked on the IV stands and the urge to cry because I can’t believe she is really gone.

I will think of her whenever I listen to Angus and Julia Stone. They’re an Aussie brother and sister duo who make great acoustic music. I never got a chance to ask her if she liked their music.

I wish I had seen her post about the vintage red Karmann Gia. I would have told her about the red Camaro Z28 I owned for awhile in my early 40s. I hope she’s zipping around Heaven in that red car right now.

I will think of her whenever I make the pesto recipe she shared.

I will think of her whenever I see something ridiculous and pink.

Her family and friends are celebrating her life today in New Jersey–28 years to the day after we laid my father-in-law to rest.

Rachel was larger than life. And now she’s larger than death.

Komen Off The Rails

First it was “Lawsuits for the Cure,” as Stephen Colbert so aptly called it. Then it was the perfume debacle. But Komen finally went too far by denying funding to Planned Parenthood for breast cancer screenings. Apparently they went too far even for some of their own staff. I just read an excellent article in The Atlantic that says Komen’s top public health official, Mollie Williams, quit in protest when the funding was cut off. I’m glad to see that someone is still guided by a moral compass. You may be shocked when you read how they engineered the end of funding. It’s back-room politics at its worst.

I’m like many others in the blogosphere–although I was beginning to have serious doubts, the one thing that kept me hanging on was Komen’s support of low-income women. No more. They’ve done away with any pretense of caring about anything except their brand, and now, their politics. They will sue the smallest event, shill carcinogenic products, and create a rule specifically designed around reproductive politics, hurting the very people they once purported to help. Because make no mistake, women with money don’t go to Planned Parenthood. Women of means will always have a choice. It’s the poor who have their choices taken away. Komen’s actions are as despicable as they are arrogant.

It’s time to hit Komen where it hurts–in their wallet. They’ve proven time and again they worship the Almighty Dollar. (They were honest enough to remove “for the Cure” from their tagline. If they were completely honest, they’d change their pink ribbon to green.) I’m never giving another dime to Komen. I’m far from a big contributor. I’m good for about a hundred bucks a year, supporting friends in the Race for The Cure in Omaha and Kansas City. But multiply me by a million people and you’re starting to talk real money.

Donate to Planned Parenthood so they can continue offering screenings to low-income women. Donate to Metavivor (which goes to metastatic breast cancer research). Donate to (and join) the Army of Women. Donate to your local church that provides rides to chemotherapy patients. These organizations remember why they exist, and actually help people. Money talks; it’s time for us to start shouting.