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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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Understanding Chronic Pain: An Eloquent Explanation for Healthy Folks

This letter to people without chronic pain has been floating around online for more than a decade; I’ve even shared it before. It is no less powerful, honest, and important than it was the first time I read it. I’m publishing it again, this time in honor of Migraine and Headache Awareness Month. Raising awareness is also about raising compassion, which this letter does beautifully. I only wish there were a way to thank its anonymous author.

Letter to people without chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying “You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

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Migraine & Sex. . . and Writing About Them

“Writing is easy. You just open a vein and bleed.” I think of this advice so often that I’ve thought of having it tattooed inside my wrist in the abbreviated form of “open, bleed” with an arrow to a vein. The advice came to mind most recently while I was writing about sex and migraine for Migraine & Headache Awareness Month for Migraine.com. In this case, though, I felt less like I was bleeding and more like I’d hung my dirty laundry in the front yard and shined a spotlight on it.

Chronic migraine complicates a person’s sex life, to say the least. Not enough people are willing to write about it openly and honestly, but it needs to be addressed, so I agreed to try. I wrote a draft and put it away, thinking I could go back and take my relationship out of it, make myself feel a little less vulnerable. Revisiting the draft a couple weeks later, I saw that I really couldn’t remove myself and still capture the heart of the message. So I sent it to Hart and asked if he was OK with all that I revealed. I held my breath, simultaneously hoping he’d give me the go ahead and that he would say “no way.”

All this agonizing reminds me of a post I wrote about my homesickness for Seattle when I lived in Boston. I posted it, cringing as I hit “publish.” Even a year later, I couldn’t read it without feeling overly exposed. I saw it earlier this week and thought, “Oh, that’s no big deal.” What felt at the time like baring my soul turned out to be nothing more than truthful, sincere writing. This, I believe, is a sign that I’ve grown as a writer, that I’m willing to dig deeper in the service of my craft.

Opening a vein and bleeding onto the page can be gut-wrenching and cringe-inducing. It also produces the most profound insights and touches readers in a way that holding back never can. Not to imply I do this all for you. I, too, benefit from writing and publishing thoughts outside my comfort zone. But it still makes me squirm. (So much so that I can only link to the aforementioned post about sex and migraine by writing about how awkward it was to write!)

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Migraine as Solitary Confinement, Controlling Lover

A non-migraineur who was close to the young woman who took her life a couple weeks ago, but didn’t know how much she was suffering, emailed me after reading my post and expressed regret that they hadn’t been able to help her. I tried to describe the isolation of chronic migraine, but capturing the experience was nearly impossible. I likened it to solitary confinement. I also explained that no matter how much the chronic migraineur may want to reach out or how hard someone tries to reach in, there’s an invisible, impenetrable barrier. While this seemed to help the person I was emailing with, it still seems an inadequate description of how much chronic migraine can distance a person from their loved ones.

When my migraine attacks were at their worst, Hart and I knew our relationship was suffering. We both wanted to improve our marriage, but I couldn’t work on it. It wasn’t that I didn’t want to, but that I simply could not. The very basics of keeping myself going took all my attention and energy. No matter how much I love my husband and wanted to nurture our relationship, I had to focus on myself.

At that time, Hart compared the role of migraine in our relationship to a difficult, demanding child. I think of it more as a controlling lover. We could have worked together on parenting a child, no matter how unruly the child or how much we disagreed. Though he could help with day-to-day life and getting me to appointments, migraine was still my “thing” and drove a wedge between us that I couldn’t see past. Migraine dictated what I did at every minute of every day. It was all that I thought about.

Solitary confinement and an affair with a controlling lover are the best ways I’ve come up with to illustrate the isolation of chronic migraine, but I know there have to be a million other ways to describe it. What’s your analogy?

Update: Just stumbled upon a post from 2007 where I asked about headache metaphors. Read the informative responses in the comments.

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Reader Newly in Love With Someone With Chronic Daily Headache Seeks Advice

A woman who has fallen in love with a man who has chronic daily headache has posted a comment asking for input on whether it is wise to stay in the relationship. Although I indulge in Dear Prudence during migraine attacks, I’m not an advice columnist myself. I’ll share my thoughts and would love for you to weigh, as I think anyone whose had a relationship and a headache disorder could provide a valuable perspective.

She wrote:

“I am divorced. I have met a wonderful man whom I love. However, he has had a headache non stop for 25 years. He has maintained a successful career and still works but has debilitating headache periods. I only know he feels bad when he tells me. But I’m starting to realize he feels bad all the time. I don’t understand how he’s not crazy. In other words it does not impaire [sic] dating. He says he feels better when relaxed. Tense work makes headaches worse. He’s been to the best headache clinics. We’ve been dating 5 months and got serious about a month ago. But I stress enormously about whether I have just fallen in love with someone that is disabled or will be. He’s just ideal for me except for the headache. I cannot imagine stopping dating when we are having such a good time. But I feel like I am taking on a disability that could leave me in a bad marriage and I want a good marriage.”

My immediate thought is that part of what she loves about this man is probably a direct result of who he has become because of his headache disorder. After all, we’re known for being brave and tenacious. Maybe his his chronic headache is as much an asset as a liability.

Just because one person has a physical disability doesn’t mean a marriage will be bad. It is undeniably something to deal with, but every person and every relationship has difficulties. It is fortunate that this one is known ahead of time.

This man appears to function quite well with his headaches and there’s no indication his condition is worsening. There’s also no guarantee they won’t worsen, nor is there a guarantee that the woman asking for advice won’t be diagnosed with a debilitating disease or disabled in a car accident.

Life is uncertain and you can only know so many variables going into a major decision. You can decide what you want out of a relationship and weigh all the factors you know and still be surprised, pleasantly or otherwise.

I write all this knowing that I was married before my migraine attacks became severely debilitating. It has caused an enormous strain on my relationship. My husband and I love each other very much and are committed to being together, but there’s no denying I’m not the energetic woman he married, nor am I the equal partner we both expected. Still, he tells me that he’d rather be with me sick than not be with me at all.

That may be the real question this advice seeker should ask herself: Would she rather be with this man even though he is sick than not with him at all?

Readers, you have loads of experience with this issue. What’s your advice?