Coming Out of the Migraine Closet
When someone comes out of the closet, they take a stand, and they take a risk. For centuries, gay and lesbian people hid their identities in order to survive. Then a few people said “no more.” Decided to risk public censure, job loss, jail, so that things could change. And things have changed. Dramatically. There is still risk involved in coming out as a gay, lesbian, bisexual or transsexual person, significant risk, but there has also been a significant change in our society around this issue.
Are we willing to “come out” as migraineurs? Are we willing to tell people we have Migraine disease? To stop complaining about lack of understanding and take a stand, educate people? Are we willing to stand up and be counted – “I’m one too!” – and change the face and the perception of this disease? I thank the GLBT movement for an extremely useful analogy.
Sometimes we need to vent about how people see our condition as “Just a Headache” or “All in Your Head.” I have done my share of ranting on this point. We don’t want to have to educate people. It’s really not fair to have all this pain and have to explain it as well! (Do you hear your Mom’s/Dad’s voice in your head, like I do, saying “but life’s not fair!”) I also know it’s hard to show up as someone with a disease. A diseased person. A disabled person. A limited person. We don’t want the world perceiving us this way. Perhaps more significantly, we don’t want to think of ourselves this way.
Diseased, disabled, limited – these are common, automatic perceptions of those with visible illnesses. Being “in the closet” is not an option with a visible illness. Here again, the amazing and courageous movement for the rights of disabled people has changed public perception. The acceptance and accommodation of those who are differently-abled has come a long way, though there is still much further to go.
The blessing and curse of invisible illness is that it is invisible. No one can look at me and see that I have Migraine disease. If they are very perceptive, they might see that something is wrong if I’m in the midst of a migraine. No one can look at me and see that I have chronic fatigue. Sometimes they can see that I look very tired. No one can look at me and see that I have chronic sinus infections. Sometimes they can hear my hoarseness or congestion.
I think we all know what the curse of invisibility is. People do not understand our pain. They sometimes belittle it. Our employers may not accommodate us. Public events are not set up to make it easy for us to be there. Our dearly loved friends and family may think we are avoiding them, shirking responsibility, failing them. In a larger sense, invisibility means our diseases are under-funded, under-researched, medications are inadequate and specialists too few.
So what’s the blessing? When our disease is invisible, we can keep trying to show up as “normal.” We can avoid having potentially unpleasant conversations. We can avoid pity and put-downs. Of course, it's a mixed blessing because people do see that something is wrong. I suspect some of the put-downs come from people seeing something is wrong but not knowing what it is. I think I’d rather be seen as someone with a chronic illness that interrupts my life, than as a messy flake who can’t be counted on to show up!
We need to remember that we migraineurs are 12% of the population. 12 out of every 100 people. 3 out of every 25! Whoever you are talking to, chances are they know many, many migraineurs besides you! Even more significantly, according to some estimates, 40% of Americans have some kind of chronic, invisible illness. Whoever you are talking to, they have people very close to them with invisible illness!
Lately I have been way out of the closet as a migraineur. I am in this public forum, all over the web with my real name, as a migraineur. I have gone to my business contacts and talked to them about the work I am doing as a Migraine management coach – and telling them that has involved sharing something of my personal story. I am someone with chronic illness who has built a business around my illness. I help others build workable lives around their illnesses. I can’t do that while hiding who I am.
These days when I show up at my business networking meetings, people ask me, with great concern, “how ARE you?” I told an associate recently, “feeling great today!” He breathed a little sigh of relief and asked “So your migraines are all gone?” (Hey, wouldn’t that be nice?) He wanted me to be better! It’s the kind of reaction I’ve been avoiding for years. “No,” I said, “it’s a chronic disease. It’s the way my nervous system is made. I wish they were all gone. But today I’m feeling great!” He nodded, I shrugged, and we went on to talk about something else.
A few months ago I couldn’t have had that conversation. For now, I keep showing up, assuming that people are not malicious, they are just uniformed. And I inform them. Gently, and as appropriate. They ask me what I’m doing these days and I tell them I’m focusing more on helping people with Migraine, like me.
So hey, migraineurs, are you willing to come out and play, out here with me, out of the closet? I’d love to have your company. We can change public perception. We can create a world more responsive to our needs, more accepting of who we are.
- Megan Oltman
Are we willing to “come out” as migraineurs? Are we willing to tell people we have Migraine disease? To stop complaining about lack of understanding and take a stand, educate people? Are we willing to stand up and be counted – “I’m one too!” – and change the face and the perception of this disease? I thank the GLBT movement for an extremely useful analogy.
Sometimes we need to vent about how people see our condition as “Just a Headache” or “All in Your Head.” I have done my share of ranting on this point. We don’t want to have to educate people. It’s really not fair to have all this pain and have to explain it as well! (Do you hear your Mom’s/Dad’s voice in your head, like I do, saying “but life’s not fair!”) I also know it’s hard to show up as someone with a disease. A diseased person. A disabled person. A limited person. We don’t want the world perceiving us this way. Perhaps more significantly, we don’t want to think of ourselves this way.
Diseased, disabled, limited – these are common, automatic perceptions of those with visible illnesses. Being “in the closet” is not an option with a visible illness. Here again, the amazing and courageous movement for the rights of disabled people has changed public perception. The acceptance and accommodation of those who are differently-abled has come a long way, though there is still much further to go.
The blessing and curse of invisible illness is that it is invisible. No one can look at me and see that I have Migraine disease. If they are very perceptive, they might see that something is wrong if I’m in the midst of a migraine. No one can look at me and see that I have chronic fatigue. Sometimes they can see that I look very tired. No one can look at me and see that I have chronic sinus infections. Sometimes they can hear my hoarseness or congestion.
I think we all know what the curse of invisibility is. People do not understand our pain. They sometimes belittle it. Our employers may not accommodate us. Public events are not set up to make it easy for us to be there. Our dearly loved friends and family may think we are avoiding them, shirking responsibility, failing them. In a larger sense, invisibility means our diseases are under-funded, under-researched, medications are inadequate and specialists too few.
So what’s the blessing? When our disease is invisible, we can keep trying to show up as “normal.” We can avoid having potentially unpleasant conversations. We can avoid pity and put-downs. Of course, it's a mixed blessing because people do see that something is wrong. I suspect some of the put-downs come from people seeing something is wrong but not knowing what it is. I think I’d rather be seen as someone with a chronic illness that interrupts my life, than as a messy flake who can’t be counted on to show up!
We need to remember that we migraineurs are 12% of the population. 12 out of every 100 people. 3 out of every 25! Whoever you are talking to, chances are they know many, many migraineurs besides you! Even more significantly, according to some estimates, 40% of Americans have some kind of chronic, invisible illness. Whoever you are talking to, they have people very close to them with invisible illness!
Lately I have been way out of the closet as a migraineur. I am in this public forum, all over the web with my real name, as a migraineur. I have gone to my business contacts and talked to them about the work I am doing as a Migraine management coach – and telling them that has involved sharing something of my personal story. I am someone with chronic illness who has built a business around my illness. I help others build workable lives around their illnesses. I can’t do that while hiding who I am.
These days when I show up at my business networking meetings, people ask me, with great concern, “how ARE you?” I told an associate recently, “feeling great today!” He breathed a little sigh of relief and asked “So your migraines are all gone?” (Hey, wouldn’t that be nice?) He wanted me to be better! It’s the kind of reaction I’ve been avoiding for years. “No,” I said, “it’s a chronic disease. It’s the way my nervous system is made. I wish they were all gone. But today I’m feeling great!” He nodded, I shrugged, and we went on to talk about something else.
A few months ago I couldn’t have had that conversation. For now, I keep showing up, assuming that people are not malicious, they are just uniformed. And I inform them. Gently, and as appropriate. They ask me what I’m doing these days and I tell them I’m focusing more on helping people with Migraine, like me.
So hey, migraineurs, are you willing to come out and play, out here with me, out of the closet? I’d love to have your company. We can change public perception. We can create a world more responsive to our needs, more accepting of who we are.
- Megan Oltman
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Comment by Ellen S on May 7, 2008 at 1:17pm -
I spent a long time on boards, etc using names that weren't my own. After a while I got where I used my first name, or initials. Many of my family didn't even know what was going on with my health, (which was fine by me!) or if they did, they really didn't have a clue what my life was like. A Christmas celebration gone terribly wrong (people angry because I didn't participate in family gatherings, or invite people over, etc), after a family wedding I nearly missed (due to a massive light trigger used as decoration in the church and reception hall) was the breaking point for me.... to an extent. I gave permission for my hubby to tell a little of what was going on in hopes there would be understanding. I wasn't willing to tell all however because I have always been a private person, and I didn't want everyone looking at me and thinking "migraine", I wanted them to see me for who I was.
It wasn't until WEGO Health came along that I decided, if I was going to expect others to take what I had to say seriously, I needed to have something invested in it as well...and
I came out of the Migraine Closet with my name. My real name.
"My name is Ellen Schnakenberg, and I am a Migraineur."
Google Ellen Schnakenberg and you now get more than just my beautiful horses, you get me, mostly unedited and, like the open book I've always been, (with the clear exception of my health), What you see is what you get. I tell what I know after 25 yrs of diagnosis and a lifetime of dealing with this, and what I don't. I have a saying (my kids call it an Ellen'ism)
You can ask me anything, so long as you won't be angry if I say "no".
I'll give clues to my opinions and happily back them up. I've never been good at lieing or hiding things, so hopefully I'll do it tactfully, because I'm human and I have bad days as well as the good ones. If I'm wrong (thankfully, new information is coming out all the time) I welcome someone to tell me and I happily pass along the corrections for the good of getting rid of this blasted disorder/disease and the pain that it brings.
I know that the next time I apply for a job, this is what my prospective employer will read. He/she may not like that I have Migraine. They may not understand and close the door on me before I ever interview. I decided that I wouldn't want to work for someone like that anyway-- someone who judged without facts and would be preoccupied with issues I simply wish to push past.
I have migraine, but it is not who I am. I has helped to shape me, but it does not define me.
Migraine has enriched my life in ways I could not have ever experienced otherwise, and, despite the pain, surprisingly I am living better in most ways because of it.
Take me, or leave me. Everyone's choice is respected.
I know that, eventually my friends and family may read what I have written on WEGO and elsewhere and see something they hadn't known or seen before. Some will read the personal thoughts I have written and judge me without knowing me or meeting me.
Part of me is excruciatingly private. I live in a very small town, and small towns are funny things. Privacy is often like a secret cache of gold you ferret away so nobody steals it... hard to find and harder to keep. More often than not, your privacy isn't invaded by what people know about you as much as by what people THINK they know about you.
I have learned many things because of migraine, not the least of which is:
People will initially decide what they want about you based as much or more by their outside experiences than by who you really are. That takes time.
So yes, I'm out of the Migraine Closet. I still have tendencies to want to hide away. I won't be parading thru the town square, but I am here for anyone who needs me. I consider everyone who writes, a friend until proven otherwise. It's how I've lived the rest of my life, I see no reason why this should be different.
© 2009 Created by Marie
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