Invisible, Not Invincible

A confession: This post is proving to be extremely difficult to write. I have opened it and closed it every day this week, editing things, changing scenarios and examples, worrying over if I should even say something. So bear with me. I'm going to write about a lot of pain in this post, and you should keep in mind that this is only a fraction of the pain I actually feel.

Today I woke up after 10:00am. My husband and I were up late watching reruns and then we were up late fretting about money and so despite the fact that I set the alarm for 9:30 it was almost 45 minutes later that I considered opening my eyes and another twenty minutes before I got out of bed. We ate breakfast together, watched more reruns, he drove to work, and I quickly sunk into another migraine--the 12th one in 11 days.

The only reason you know that is because I'm telling you, but there's a lot you could figure out without me saying it. If you looked at my Facebook page you would see a Bible verse, and a video about this insane 3D pen that I desperately want. You would see over the last couple of days I've added photos from a trip to the zoo, many pictures of my dog being adorable, and a status about a job I didn't get. If you saw my Pinterest account you would see a version of Bohemian Rhapsody done by The Muppets, and an obscene amount of dresses and craft ideas. This week I have also called my parents a couple times, sent a few e-mails, read some articles, made several reviews on Yelp.com and will soon be reading 9 stories written by my father, which I'm considering illustrating. Check my Goodreads account and it will tell you what books I've read recently (The Princess Bride, Love That Dog, etc. etc.) and that on Friday I was on page 331 of Sentence of Marriage, a story set in Victorian Era New Zealand. I finished it last night before my husband got home. To the world outside my apartment, I am "active" socially and I am fine.

But I'm not fine. A migraine is not fine. The 12th migraine in 11 days is not fine.

Truthfully, my purpose here is not to complain or get sympathy. I will accept sympathy, but it's not my goal. I will not accept advice. In fact, the reason I don't express my pain on "the social network" is because too often all people want to give me is advice. I'll talk more about advice in a minute. The underlying issue here, really, is understanding, and perhaps awareness. Let's face it, people--if you don't see a person suffering, and they don't tell you they're suffering, you probably have no idea they're suffering.

Chronic migraine is an invisible disease. It's similar to diabetes and lupus, arthritis or obsessive compulsive disorder. I can't imagine what it's like to be plagued by any of those things (although arthritis is probably in my future due to a lifetime of typing and drawing and genetics... you get the picture.) But I do know what it's like to suffer silently, I do understand the struggle of depression, of anxiety, and of these migraines that I hide extremely well. I understand pushing through and not telling people and putting on a happy face, and dealing with the whole, "But you look fine!" thing and pretending that it's not a big deal.

But, it IS a big deal. It's a big deal to me, and to all of the people who suffer silently. I can't speak for anyone who has lupus or cancer, but I can speak for "my people": people with migraines, or depression, or anxiety.

So here's how my day looks, if I'm having "issues." I woke up this morning with a pre-migraine--feeling fuzzy, head feels heavy, finding difficulty opening my eyes. This means the first thing I want is coffee. Despite how much I love coffee (which is honestly quite a lot!), I actually don't have it every morning, or even every day. But today, I wanted coffee, which means I also needed to eat right away (I usually wait about an hour to eat), because drinking coffee on an empty stomach gives me the shakes. Caffeine will do that. You know. So my husband made pancakes and coffee and I woke up very slowly, because this migraine is not allowing my eyes to open.

I don't have anything on the agenda for today, which is normal. But if I did, I might consider cancelling. If we needed groceries it would have to wait until tomorrow. I might ask Joey to get groceries for me but he's working until 11 tonight so it will just have to wait. If we had plans with friends it would cause me anxiety, I would take a long time to get ready, we would be late, and they would have to wait. Last Monday I had an interview in the middle of a migraine, so I actually showed up an hour ahead of time because I knew I would have to sit in the car, take some migraine painkillers, and wait until I was calm enough to go into the office. If I have migraines at church I have to into the bathroom for a few minutes sometimes twice during the service, because sitting still takes too much effort and listening to buzzing microphones is too much effort and ALL of it is too much effort. I want to be there, but it's necessary to take breaks.

A migraine, for me, is consuming. It sits on top of my head, at the front of my skull, like a very clumsy hat. It fills my vision, its fuzziness covers my ears, it stretches into my stomach and makes me nauseous--except I'm incapable of throwing up, so I just sit there feeling sick. A migraine is a powerful force that should render me useless and helpless and yet I sit through it day after day because it's invisible and nobody understands it. So I don't tell anyone.

You know what would happen if I did tell anyone? They would give me advice. They would say "hold a warm cloth to your head" or "hold a COLD cloth to your head" or "you should get an allergy test" or (my favorite) "you should see a doctor!" [For the record, I cannot afford doctor's appointments. Having people remind me by advising I visit a doctor makes me both sad and angry.]

What people don't realize is that I've been suffering with migraines for half of my life. I have tried everything. I have taken numerous drugs in many different forms, some worse than others. I have had an allergy test done, which was long and painful. I've been to many doctors many times and heard the same speeches over and over again. I do not need advice.

What I do need is coffee (or tea), a quiet (sometimes dark) place to be, and something to keep myself busy and calm. So I get on Facebook and write a status about the delicious coffee I'm drinking. I get on Pinterest and find pins of cats doing something funny. I write in my novel and anxiously hope I can get another 1000 words down before I have to close my eyes. I do not want advice. It does not help me.

I just want you to think for a second about the other people you know who have invisible problems. For instance, I have a friend who is diabetic. Let's say one day she has a low blood sugar, she feels awful, and she says so on Facebook. I would never ever consider commenting on her status with some half-witted advice. I might tell her that I love her, and that I hope she feels better. But no advice. Or let's say I had a friend with cancer, complaining about chemotherapy. Or a friend with arthritis, complaining of joint pain. I wouldn't consider it then either.This is partly because I have never experienced any of those things, and my advice would be meaningless, but also because giving unwanted advice is like noticing somebody's amputated leg and handing them a Hello Kitty band-aid.

So why do people feel like they can offer me advice?

1. Everybody has headaches. Everyone gets them, so they all feel like they can offer a useful tip to me,
2. They think it's the nice thing to do.
3. They are a nurse/doctor.
4. They think I'm looking for attention and they feel advice will make me get over myself.

Let me repeat: I have suffered with these soul-sucking migraines for half of my life! These are not headaches caused by a loud concert, they do not happen because I am having caffeine withdrawals, I don't get them because I eat junk food or have crazy allergies. Whatever the reason is, I haven't figured it out yet, but I am definitely not going to suddenly figure it out because someone offered me advice on the social network.

Of course, now that you all know I don't want your advice, then the real conundrum is why in the world am I telling the social network about my problem. Here's what (I'm assuming. ha.) people assume.

1. I want advice. (nope. covered that.)
2. I want comfort/sympathy. (sometimes.)
3. I want attention. (sort of, but not entirely.)
4. I want help. (no one ever actually assumes this, even if I explicitly say, "help meeee!")

Number 3 is about as close as people get. Somehow, the real answer is just out of reach. You want to know what I'm really seeking when I tell people? It's the same thing everybody wants, no matter what they feel, no matter who they are: acceptance. I want people to see my hurt and accept me. I want them to understand that I'm suffering despite the fact that I'm "socially active."

Here are some things you can do for me, and other people who suffer from invisible struggles. I am mainly talking about things you can do on the social network, but most of these examples can apply in real life as well.

1. Tell the person you love them/care about them/are praying for them/etc. Be simple and specific.
2. Ask the person if there is anything you can do to help/comfort them, but ONLY if you mean it.
3. Offer advice without giving it.
4. Offer help if you have a legitimate means of helping! (i.e., I would love it if a doctor offered me a free consultation, head scan, whatever.)

Please remember these things. Please remember that giving advice should not be your first instinct when someone is struggling with something. Please remember that I walk around feeling like somebody dropped a piano on my head, and that other people walk around with the same feeling in addition to the sensation of being doused in lighter fluid and set ablaze or having all their knuckles broken or an elephant doing the cha-cha in their digestive system. Give me, and these people, your care, your love, and your understanding.