A Mental Health Advocate Uncovers Her Own Internalized Stigma: my journey toward healing

Over the last several months, have you been continually worried or anxious about a number of events or activities in your daily life? “No.” What good would worrying do? Worrying is for the weak and undisciplined. 

Do you feel bad about yourself — that you are a failure or have let yourself or your family down? “No.” Failure is obviously not an option. 

Do you feel tired or like you have little energy for things you need or want to do? “No.” It doesn’t matter if I have energy, I must do all the things regardless of how I feel. 

My doctor sets her computer down and gently asks if it’s possible I’m assessing my mental health against my husband’s. This catches me off guard and I look up, feeling guilty. She leans forward, compassionate but resolute as she says, “You know, he doesn’t set the standard. Your experiences and needs are valid, even if his are more intense. You deserve peace too. You can’t do this alone, nobody could.”

My eyes fill with tears and I look back at the tile floor, mumbling something about how hard it is to tell what is normal after being in crisis for so long. I minimize my own needs because I can’t imagine how I could handle one more diagnosis, one more issue, one more thing to become an expert about before I can find relief. But sometimes it catches up with us, no matter how hard we try to shove it down.

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A year ago on an ordinary school night I was tucked into bed with my kids, reading a pile of storybooks. All of the sudden my arm started to go limp, my sense of reality slowed, and my heart began pounding explosively loud in my ears. I felt like I was going to throw up, had cold sweats, gasped for breath like an elephant was on my chest. I thought I was having a heart attack. I thought I was dying.

8 hours and a dozen tests later an ER doctor pronounced me perfectly healthy. “It’s amazing how the mind and body work together.” He said. “Even though you have all the symptoms of a heart attack, your heart is working perfectly well. Sometimes our brains do this in response to stress.”

“But I wasn’t stressed,” I protested. “I was relaxed, cozy with my kids in bed. It hadn’t even been a stressful day!” He nodded and explained that stress triggers a release of cortisol into our blood where it builds up over time and can lead to these massive events that occur randomly, without warning. He told me to take it easy, let my body recover, and follow up with my doctor.

It took three days before I felt like myself again. I was baffled and embarrassed. Sure, our life was stressful. Being a full time caregiver and advocate for my husband in his mental illness while also caring for our preschool twins was taking a toll. Yes, we had recently lost the support of our faith community. No, we didn’t have family nearby or the resources to pay for help. But I was managing just fine! I prided myself on keeping our little family going, on attending to every need. “I can do this” was the mantra that got me through the worst days. I’m doing it. I’m doing it.

The follow up appointment with my doctor left me feeling even more defeated. She suggested I do a better job of prioritizing my own needs – sleep, eating healthy foods, making time for movement. It seemed laughable. My kids still woke up at least once a night, my grad student husband has life-halting anxiety attacks at least twice a week, and we were surviving on whatever I could quickly throw together for meals. How was I supposed to make time for all of this extra stuff? “You just have to. You’re carrying so much. I know it’s hard, but you need to take it easier. Your body needs rest.” Yeah, I know. But HOW?

Over the last year I’ve done my best to lean into this intense self-care regimen. I enrolled my kids in full day prek, prioritized early morning workouts, allowed myself to explore this writing dream, found a few new favorite cookbooks and threw myself into preparing exciting new healthy dinners several times each week. I got to bed earlier and said no to more things, set boundaries in relationships that were doing me harm. But the symptoms persisted. Every other week or so I would feel the fluttering in my chest before a heaviness moved in, keeping me awake all night or immobilizing me all day. I tried to breathe through it, journal through it, reason myself through it. It was a lot to manage but it was sort of working.

Until it wasn’t. I woke up one night this winter in a full episode, my heart beating wildly and my body so seized up I couldn’t move. The next morning I finally called for another follow up with my doctor and a few days later found myself sitting in the exam room, spilling out the story of the last year: all the things I’ve tried, all the plates I’ve kept spinning, how defeated I feel. She listened carefully until I finished, making notes murmuring affirmations. Then she smiled and asked if we could do a mental health screening.

Oh great. I thought. Now she thinks I’m crazy. My internal dialogue swung between guilt about my own stigmatized thoughts and a desperate need to preserve the story I’ve been telling myself: that I am the healthy one, dependable, strong, unshakable.

I didn’t know what to say so I just nod, keeping my eyes fixed on the floor.

As she asks each question it seems to hang between us, suspended in the deafening silence. I bat them away with emotionless one-word answers until she pauses and gives that speech about my mental health being entirely independent from Drew’s. More tears.

She continues, “There’s a medication I would like you to think about trying. It’s very safe, and when it works properly it helps people to feel like they have that extra bit of head space, a little less weight on their shoulders. I know it can feel like a big step, but I really think it could help you.”

And she was right. It took me two months and another massive panic attack before I was  brave enough to try it, but since then it has truly changed everything. For the first time in years I feel like I can breathe again. I can see beyond the immediate crisis cloud and hear what my body is telling me. I am so grateful.

The other day a friend was telling me about a mental health training she had at work. “Did you know,” she said, “that people wait, on average, 10 years before seeking medication for their mental illness?”

I did not. TEN YEARS? It sounds ridiculous – who would wait ten years for medication that could so easily improve their lives?

Then I thought, oh yeah. That’s me.  

Sometimes stigma isn’t intentional antagonism about mental illness. Sometimes stigma is just the quiet lie that we aren’t miserable enough to deserve care. That our experiences don’t matter. That as long as someone else is worse off, we should stop complaining and soldier on.

But it’s not true.

You deserve health.

Peace.

Good sleep.

Support.

Freedom from anxiety, physical pain, intrusive thoughts.

It doesn’t matter if they happen every day, or only once in a blue moon.

You deserve health.

We all do.

We cannot de-stigmatize mental illness until we learn to honor the connection between social, psychological, physical, spiritual, and emotional health. If we lack language to name our complex experiences, how can we pursue health for ourselves or others? One of the most important mental health practices we can adopt is simply to honor our own experiences, feelings, and needs. When we are tuned into our bodies we can more easily notice when things shift, when we begin to feel a bit frayed, when we need help. And, in turn, we can support those we love without over extending or denying our own needs.

The spectrum of mental unhealth to mental wellness is wide and we move back and forth across it day by day, season by season. Just as we would be outraged if a doctor turned away a patient with an infection or rash and told them to suck it up and come back when they were totally incapacitated, we should be equally concerned with the wounds of our mental health; adjusting our lives and seeking support and treatment to keep all of the parts of ourselves in balance as we pursue health and wholeness in every area of our lives.

I was so afraid to acknowledge my own decaying mental health because I thought it would mean a loss of control, accepting defeat, disqualifying me from the role of caregiver and advocate for my husband. Instead, I have found that learning language for my own mental health experiences has helped me to connect more deeply in my marriage and allowed me to better advocate for my own needs, validating them alongside, rather than in conflict, with his own.

I still occasionally experience the heart palpitations and fatigue of minor panic attacks. But now, instead of powering through or beating myself up for “failing”, I thank my body for showing me what it needs. And I tell someone. Because nobody can fight this battle alone, and because I’m learning to see that our inherent codependency is actually a really beautiful gift.