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Having Nothing Left to Give

When writer Anne Lamott’s brother said his wife was near death, she desperately wanted to go visit and be there for her family, but was momentarily physically and emotionally disheveled from her own life stuff. She called a friend who said, “Dearest, you do not have what John and Connie need. You don’t have it to give, because you are kind of crazy, and depleted. What if you got centered, and sane and full, through rest, and friends and hikes? Then you will know what to do, and when.”

“You do not have it to give.” I spent years trying to give to others what I didn’t have to give. I wanted to, very much, so I kept trying, despite being completely depleted by chronic migraine. I was never satisfied with what I gave. I wasn’t present enough, wasn’t caring enough, couldn’t follow-through when I wanted to. I was physically incapable of providing the support I wanted to give. But instead of recognizing my limitations, I kept on pretending I was OK. I wasn’t satisfied, nor were my loved ones. They knew I wasn’t really there, they knew I probably wouldn’t keep my promises. I hated this.

When I finally got that I couldn’t give away what I didn’t have, I withdrew. I knew that I had to get “centered and sane and full” before I could really be there for others. Sounds wise, except that I was so sick and wrecked that I withdrew for years. I’m still withdrawn, still focusing so much on how I feel and taking care of myself that I’m not as engaged with my loved ones as I want to be. I hate this, too.

But it’s what I have to do. I am better – so much better than I was – but I continue to have migraine attacks more days than not. I can now stop some migraine attacks with medication, but I still lose at least few hours each time one comes. And sometimes two or three come in a day.

I am over the moon over how much better I am because the relative improvement in my life is so large, but I’m still quite sick. My version of feeling good has far more pain, fatigue and brain fog than a healthy person’s definition. I’ve adapted to that and am (mostly) OK with it, but it causes a lot of hurt and confusion for my loved ones. If I’m doing so well, why am I not calling on a regular basis? It’s because doing “well” takes an unbelievable amount of physical, mental and emotional energy. That’s so hard to wrap my own mind around that I can hardly expect people who don’t live with me to do so.

Even on great days, my pain reaches a level the comparative pain scale describes as “very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you a shot.” That’s just pain, it doesn’t account for all the other symptoms of migraine, the most prominent of which are, for me, fatigue, brain fog and nausea. I have to consult with migraine before I do anything. I have to attend to all the same things of life that everyone deals with on a highly compressed and unpredictable time schedule. I can go from feeling great to laid up in less than 15 minutes. Despite planning nearly every day to call someone after I get the absolute necessities of life taken care of, I’m rarely able to make the call. By the time I get there, I have nothing left to give.

Getting rested and centered and full before giving to others may make a person most available to their loved ones, but what if you never get there? Where’s the balance between taking care of yourself and being there for the people who are important to you? I’ve gone from one extreme of the continuum to the other and am now trying to move myself more toward the center. I can’t figure out how to do it in a way that doesn’t compromise my own well-being.

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Relearning How to Stand Up for Myself

Standing up for myself and having difficult conversations is something I haven’t done much of in, oh, 15 years. Doing these things has always been an effort for me, but I managed to do it fairly effectively before migraine overwhelmed me. Since then, all of my energy and emotional wherewithal have gone toward managing migraine. Added to those obstacles is the fact that migraine compromises my ability to think and find the words to express my needs. Simply put, I’ve been too exhausted and brain-fogged for the work of of conflict and difficult conversations.

It’s a big problem. It has reached nearly every area of my life, from store clerks and customer service reps, to coworkers, to friends and family. I’ve berated myself for being a doormat and felt like my place in the world had shrunk to almost nothing. Disappointments and frustrations mount and I feel like I have no voice. It’s not an emotionally healthy way to live, but my physical health has left little room for emotional self-care. I’ve been reconnecting to my emotional self and relearning those self-care skills since April, which has been hard, rewarding work.

I got to put that work into action yesterday by standing up for myself to the massage therapist I’m seeing for craniosacral therapy. My first sessions with her were great, but in the last two, she started some emotional therapy-type work and visualizations that were not OK. She meant well, but her technique left me feeling emotionally violated and unsafe. Instead of canceling my remaining appointments and never seeing her again, which was my instinct, I called her and established new “ground rules.” Confronting her was as much about the need to assert myself as it was about wanting to continue craniosacral therapy with her.

It’s only one step and was a relatively easy one, since I was pretty sure she would be receptive. Still, it’s one more step toward feeling like I’m a whole person who occupies a valuable place in the universe, not a migraine zombie.

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The Silencing Effect of Chronic Illness

“Sometimes the accumulation of his silence seamed to heap upon him, as slowly as snow, until he felt he could no longer be seen.” –Mr. Panicker (a character in “Aerogrammes,” by Tania James)

And sometimes I lose my breath when lines in a story are so applicable to life with chronic illness. Whether a person withdraws from others due to devastating physical symptoms, a lack of understanding from others in our lives, the clinical depression that’s comorbid with so many illnesses, or yet another of the myriad factors for social withdrawal, chronic illness is incredibly isolating.

I cut myself off when my attacks are severe because it takes more physical and mental effort than I’m capable of giving.Unfortunately, that’s meant years of silence in some cases. Even when I feel “better” (my version of better being far sicker than a healthy person’s idea of well), my energy is so limited that I often spend it all on the minutia of daily life rather than socializing. While I’d very much like to reconnect with my loved ones, the day-to-day tasks feeding myself, seeing doctors, doing laundry, wrangling with health insurance, and working have to come first.

Just like Mr. Panicker’s silence accumulates, so do the symptoms of chronic illness. As the symptoms pile on, a patient can become unrecognizable to even ourselves. How can a person connect to others if they don’t even know who they are anymore? I used to dread having to talk about my life. I had nothing to talk about other than illness, the severity of which I was unwilling to acknowledge. My days were solely dedicated to survival and not in an exciting I-defeated-a-grizzly-bear kind of way, but of the can-I-go-to-the-bathroom-now-or-does-it-hurt-too-much-to-move, I-must-feed-myself-so-hunger-doesn’t-trigger-a-migraine variety. Now, I’m more willing to talk about illness and I’m more aware of how much work I do every single day, but I still often think my life must look terribly boring to other people.

The stigma of chronic illness imposes yet another kind of silence. Some people don’t feel like they can talk about their illness without sounding like a complainer, so they just don’t say a word. Others always have to put a positive spin on it, focusing on some miniscule change or possible new treatment. (I’m guilty on both accounts!) Then we encounter the numerous healthy people who are afraid of chronic illness or think they have the answers, forcing their beliefs or cures or stories on us. In these ways and many others, those with chronic illness, like Mr. Panicker, are unseen.

It’s not that people with chronic illness want that illness to be at the forefront of every interaction. We don’t want to be singled out or pampered or treated any differently, but we want to be seen. We want to have all the aspects of ourselves recognized and illness is one part of who we are. When someone tries to deny our realities and experiences or forces a “cure” on us, they aren’t seeing us for who we truly are. For me, that’s what hurts the most — when a person can’t be bothered to see all of me, chronic migraine included, and see what an amazing feat it is that I get out of bed every day.

It took me many years to accept that the people who tell me I’m brave are right. I am courageous and strong for trying to live a full, happy life when I have a debilitating chronic illness. I can dismiss the people who call me weak because I am sick because I know they are wrong. It’s the people in-between, the ones who don’t blame me, but also think I would get better if I tried harder or the ones who gloss over the role migraine plays in my life that I get most frustrated with. Those who make the effort to see me for who I truly am, who are not afraid to acknowledge my illness, are the only people to whom I feel deeply connected.

Again, I don’t want to be only seen as a person with chronic migraine, but to have all the aspects of my identity — good, bad, messy, complicated — to be acknowledged. Illness isn’t all that I am, but it’s a huge part of me. A part that makes my life difficult and my triumphs noteworthy. Denying or ignoring the role of chronic illness in my life invalidates the tremendous achievements, the emotional fortitude, the unbelievable strength I display every single day.

 

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Our Thoughts Do Not Cause Illness, We Cannot Think Our Way to Health

What’s the likelihood that the content of the community college meditation class I’m taking in order to qualify for student health insurance would infuriate me? Almost inconceivable, I would have thought, just as I would have thought it impossible that a PowerPoint could cause me to literally shake with rage. The first slide says:

“If you don’t want to be ill… Speak your feelings.

Emotions and feelings that are hidden, repressed, end in illnesses as: gastritis, ulcer, lumbar pains, spinal. With time, the repression of the feelings degenerates to the cancer. Then, we go to a confidante, to share our intimacy, ours “secret”, our errors! The dialogue, the speech, the word, is a powerful remedy and an excellent therapy!”

And it goes on slide after slide with similar explanations after each of the headings, “If you don’t want to be ill…”

  • “make decisions”
  • “find solutions”
  • “don’t live by appearances”
  • “accept”
  • “trust”
  • “do not live life sad”

Really? All I have to do is think the “correct” way and I won’t have chronic migraine? Gee, sure wish I’d known how easy it is to erase a neurological disorder. And I bet my doctors haven’t told me about this quick fix because they’re shilling for pharmaceutical companies.

Our thoughts do not cause illness. In case that’s not clear: OUR THOUGHTS DO NOT CAUSE ILLNESS!

As with so many widespread misguided notions, there’s a grain of truth in the connection between thoughts and illness. Stress, which is often intensified by thoughts, can exacerbate many already existing illness, including migraine and other headache disorders. Chronic stress can lead to ulcers, heart disease or adrenal failure. Still, stress is not solely perpetuated by thought, but also by circumstance. Furthermore, a genetic predisposition to a particular illness is usually present in those who develop so-called stress-related illnesses, and environmental factors can also contribute to illness. In other words, the connection is not as simple and clear-cut as this PowerPoint states.

Illness is fickle and cruel. It cannot be controlled, despite our greatest wishes. It can’t even always be treated. Our thoughts can make illness easier to bear (read How to Be Sickfor fabulous guidance on this), they can inspire us to keep trying, but they cannot, cannot cure us. Perpetuating this belief comes at the great cost of further alienating the sick from the healthy. People with illness do not need judgment and righteousness, but understanding and support.

Plenty of people are brimming with negativity and hatred, but are perfectly healthy. Many others are fonts of optimism and hope, yet are mired in chronic or life-threatening illness. We are not to blame for being sick, our thoughts are not to blame. No matter how many people, how many teachers, how many PowerPoints by doctors with unspecified credentials may tell us otherwise.

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True Strength

“Pretending to be happy when you’re in pain is just an example of how strong you are as a person.” A migraine group shared this on Facebook this morning and I’m so upset that I’m shaking. I’m not dissing the group, they’re doing great work and share a lot of helpful information, but I completely disagree with the idea that putting on a happy face is a sign of strength. Having the courage to be vulnerable, showing people how much you’re struggling, being honest about what you’re going through is the truest show of strength.

I’m very experienced at putting on a happy face and pretending like everything’s OK when I’m in massive pain. I did it for years, thinking it was the only way I could survive life with chronic migraine and not be labeled a complainer. Those were the loneliest, scariest, hardest years of my life. This pretending was a five-foot thick wall separating me from everyone in my life — I couldn’t connect with anyone, even my husband, because I wasn’t being honest about the greatest struggle in my life. I wasn’t even honest with myself.

Believing that putting on a happy face would make everything better constantly invalidated my everyday experience. I questioned my own fortitude and perseverance and the severity of my symptoms. I lost my identity, not just to illness, but because I couldn’t see my true self underneath all the pretending I did. I never allowed myself to process the tremendous grief that came with the quality of life I lost due to migraine. I sunk deeper and deeper into depression.

Only by acknowledging the depth and breadth of my illness to myself and others, have I begun to rise out of depression. I didn’t actively choose to show others how sick I was, but became too sick to function without the help of loved ones and too sick to pretend that I was OK. It’s been a slow process and I’m still learning the appropriate level of openness (see Migraine & Empathy for suggestions on how to gauge disclosures). Sometimes I overshare and worry that others will think I’m weak or complaining, but most of the time I’m able to say “I have chronic migraine” as if it were just another demographic fact, like that I grew up in Phoenix or lived in Seattle for six years. I am continually surprised that people do not think I’m weak, but are awed by what I’ve been able to endure and accomplish.

Our culture’s denial of the realities of illness teaches us that pretending you’re happy when you’re in pain is strength, but it’s actually cowardice and fear. True strength comes being your authentic self and acknowledging all the complex, messy intricacies of real life. It’s not easy, especially considering all my years of cultural conditioning and buying into misguided beliefs about illness, but I’m learning that living a rich, authentic life with strong connections to others is far more rewarding that hiding behind masks of artificiality.