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 uninformed. And I inform them. Gently, and as appropriate. They ask me what I’m doing these days and I tell them I’m focusing on helping people with Migraine, people 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

Don’t forget your sunglasses, it’s bright out here!

                                                      Closet image courtesy of Matthew Blank 

                                                      ADA Road to Freedom image courtesy of Jay Wilson

                                                      Cave exit image courtesy of David Wilmot

 

We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com

Comments

[Mary]

Love, love, loved your post! I loved your analogy, it was so on point.

I am all for coming out of the closet and helping to teach people about the horrible disease with which we live.

I am always teaching my one sister about migraines, she just doesn't get it. I am forever correcting her and explaining the truth about migraines. I am always so surprised at the myths she believes about this disease.

I am all for education, it is the only way to get the word out about migraines and debunk the many myths and crazy ideas people have about the disease and get to the truth.

So yes, I am totally with you!

Again, thank you for an awesome post.

Mary

[MaxJerz]

Well, I'm working on it.

To be totally honest with you, in theory, I love your idea. I think that we should all strive to be out of the closet, to be open about our disease and aim to educate others. Education is the only way migraine disease and headache disorders will ever be viewed with legitimacy.

That said, I struggle with this quite a bit. I'm right at the beginning of my career, still proving myself. I'm in a field (architecture) dominated by old men, and as a young woman I'm already starting at a point where I need to prove myself as worthwhile. A lot of my job is dealing with clients, consultants and contractors, and oftentimes showing weakness can be death. At least at this stage. It's a sad truth that many people could care less about the plight of others, regardless of how much you're willing to educate them.

So in some ways I'm still very much in the closet. But in others, I'm working on being more public about this - my team all knows I suffer from migraines. I've posted information about migraines and the AHDA on my cubicle. I'm much more open with DBF than I had been, and I've worked to educate my mother (also a migraineur) about our disease.

Hmm, you've got me thinking. I may have to write a post on this myself. Come check out my blog when you have a chance - I've just started it up, but I'd love to have you there!

-MJ

[Megan Oltman]

Hey Thanks Mary - glad you're playing.

MJ, if I left you pondering... pondering is good. I didn't mean to give a prescription for all situations. We still have to exercise good sense about when it's appropriate. But I'm glad you're taking a stand on the side of education. It's so easy for us to default to not saying anything, and just wishing they'd all understand.

[Sue]

Hi Megan, I think I found my way via the Headache and Migraine Carnival over at Diana's place...

Love this post. It's so true that an invisible illness is often tempting to hide, mostly because of the investment of energy that it takes to correct and educate people. But, as you said, it is important for people to understand what living with a chronic illness (or several) is like.

This is an encouraging post, so thanks.

[Christy]

I have been thinking about this a lot lately. In the past few years I have "come out of the closet" about my migraines and this is how I found out how many other people I know, work with, or just happen to run into also have them. Once I began talking about it, they would talk about it also. I am, however, an older person with a secure job and don't really have anything to fear from being open. Thanks for writing about this.

[Neomi]

I'm definitely out of the closet....and made a decision to be so since I learned of what I actually had. I felt like it was important that people understand what it is. One of my friends still thinks migraine means "bad headache" and that some sort of drug will help. And that I just need to cut back the stress. I try so very patiently to explain to her about how migraines work. I hope that someday she'll understand it better - what's so interesting is that she says she gets migraines too.

I like that you bring up the invisible part of migraine. I know I'm really good at pretending everything is fine. Some days I go home and cry because I've tried to be so brave, but I honestly just feel scared. It's odd when people tell me I'm brave, because that's often the last thing I feel.