By

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.

By

What Does a Migraine Feel Like?

Migraine Guided Visualization, my latest post on Migraine.com, walks non-migraineurs through the symptoms of the pain phase of a migraine. What would you add to this “guided visualization”?

By

Participate in a Research Survey on Chronic Migraine & Couples

Everyone with chronic migraine knows it takes a massive toll on romantic relationships and families, but there’s little research on the topic. Here’s your chance to help remedy that. Karen Bacher, a migraineur and family studies PhD student at the University of New Mexico, is recruiting couples to complete an online survey to study the impact of migraine on the families of women with chronic migraine. By sharing her findings, she hopes to raise awareness among health care providers, counselors, and patients’ families.

Participants need to be married or cohabitating heterosexual couples between the ages of 21 and 55. The female must have chronic migraine, while their male partner must not have migraine. Partners will complete an online survey separately, which takes about 45 minutes per person. At the end of the survey, participants will have the option of entering a drawing for a $100 Visa gift card.

Couples interested in participating may contact Karen at bacher@unm.edu for full eligibility criteria, benefits of participation, and the survey link.

Although I haven’t seen the survey, I’ve been emailing with Karen and am really excited about this research project, which is for her dissertation. I believe Karen “gets” the severity and impact of migraine and genuinely wants to do her part to improve the lives of chronic migraineurs. In case you’re not sure, it may help to know she’s had migraine for 29 years and gets no relief from medication, while her sister is disabled due to migraine.

I’m unable to participate because Hart has episodic migraine, but I urge you to do so if you fit the criteria. Understanding the weight of chronic migraine on families and romantic relationships is one crucial element in de-stigmatizing this illness. It could also improve our care from doctors and therapists. And, of course, anything that helps families better comprehend the plight of migraine is a boon to all migraineurs.

By

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.

By

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!)