Oscar-winning Performance.

Otherwise known as…your life. When you live with chronic pain, life truly is your stage. You smile; you make small talk; you get through as much of what must be done each day as you can. You show up to work, perhaps. Many of us can’t anymore. We’ve lost that theater.

It’s hard at first. Particularly in the early weeks and months when you haven’t yet stopped waiting. Waiting for the pain to stop, or lessen. It’s the moment when you realize – or perhaps accept, more accurately, that this could be – most likely is – permanent. The pain isn’t going away. The condition – it’s a part of you. It has been your primary focus. The focus of your doctors, your friends, family, coworkers, schoolmates – everyone you know or see. But in that moment of acceptance, something changes and you begin weaving it into the background in ways you never thought possible. Doing things you previously imagined you might never do again. You take off your sun glasses for the sake of respect in conversation. You drive, despite the piercing pain of the headlights. You attend a party you know will take a devastating toll. You go to the grocery store. You take your kids to the park. You do the things that most people take for granted each and every day. And you do it in pain with a smile on your face because it’s how we have learned to survive.

Years go by. You realize that there are more people in your life who have never known you without this pain than those who ever knew you pain free. Some still don’t know. It’s incredible. The reactions when people find out? Sometimes I’m not sure if I’m more astounded by how they could have missed it than by how I could have hidden it so well. I think back to all the times in conversation when I thought I would pass out from the pain – but apparently my performance never faltered. I have former clients from my consulting company who demanded me on all their projects. They never knew. Coworkers who were clueless until the day I left on disability. People in all manner of interaction who react in such amusing ways when they learn the truth that has literally be right in front of them. At least that’s how I’ve learned to look at it. Some with awe – both at my ability to hide the pain, and that to withstand it. Some with shock or sadness or my very least favorite (read: I HATE this….) – pity. “Oh you poor thing!” I get it. I can’t blame them. I think it’s meant more as an attempt at compassion, but pity is pity and I work too damn hard at this to be pitied. So do you.

Let me ask you something though…if any Hollywood actor was told he/she would be on set for the rest of their lives, never allowed to break character…what do you think the reaction would be? Disbelief? Outrage? Laughter? That is the role we often feel we are cast in. Keep up appearances. Hide the pain. Wear the mask. But let’s be real. None of us can do it. We can’t hide it all the way all the time. And we need a safe place to remove the mask. The let down our guard. To be vulnerable. To be in pain openly. Cry if we need to, even though it makes it hurt more. Somehow, every now and then it helps too. Sometimes just being able to say that it hurts. Or that we’re tired of it hurting. Without judgement or pity or guilt or frustration. That’s a lot to ask. Of anyone. It’s hard for those who care for us most NOT to feel those things. Not to show those things. And they will come out too from time to time, so to be fair – I guess we can’t expect to never get that side of it.

But do you have that safe place? Do you have those people in your life that you can be nakedly in pain in front of without judgement or pity? Do you have a way to step off the stage and just be – you – pain and all? If the answer is no – then something has got to change. Finding that safe place – that safe person or people – is worth a thousand “remedies.” The mental and emotional and physical fatigue that accompanies these daily performances is SO underestimated.

Give yourself the credit you are due. Take the breaks you need to take. Find the safe place. The comfort, support and tenderness you deserve. Take off the mask and cry. Curse your pain and all the effort it takes to hide it. You’ll be amazed at how renewed you will find yourself. How much more comfortable that mask is to put back on when you get out of bed, or take a shower or walk out the door or if you’re lucky enough – when you go to work. It sounds like such a small thing, to stop acting for a short time. But it has a power that those who don’t go through life wearing this mask will never comprehend. How lucky they are.

Here’s to the performances, the intermissions, and most of all – those who make taking off the mask possible!

This post goes out with a special thanks to my amazing family and friends – thank you and I love you all so much! I could not fight this battle without you!

Migraines, Meds and Making Connections

Migraine Support Group cover photo – courtesy of the U.S. Pain Foundation

I recently joined a Facebook support group for migraine sufferers. It has been an experience that leaves me with such a variety of emotions. Sadness. Empathy. Frustration. Compassion. Fury. Hope. I read the posts and it is as though I am reading something that younger versions of me might have said. Versions of me in the early stages, with ill-equipped doctors doling out terrible advice and the wrong meds. Giving up on me. Over and over. Versions of me that wondered if anyone else on the planet could possibly be experiencing what I was going through. Non-stop pain. Pain that was crippling. Pain that made me wish I was dead, or at least unconscious until someone invented a cure. Isolation. Judgement. No one could SEE my migraine so many people dismissed it, underestimated it, assumed I was faking or being dramatic. Loss of wages for when I couldn’t get to or stay at work. Loss of income when I was repeatedly let go for absenteeism. Accusation of being a drug-seeker when I wound up in the emergency room. The inability of so many ER staff to distinguish between seeking drugs, and seeking comfort, progress, a few moments, at least, with less pain. Versions of me that could sense when yet another doctor was about to give up on me or simply say that my only option was pain management with narcotics. Versions of me ready to just give up all together.

More than 14 years of living with this condition has left me wiser, more cautious, patient, more discriminating about who I allow on my treatment team, and eager to get the word out that if you are dealing with migraines, or any other chronic condition – know this – YOU ARE NOT ALONE. The first time I actually believed that was when I was being treated in-patient at the Michigan Headpain and Neurological Institute. A team of doctors from various disciplines led by Dr. Joel Saper, world-renowned for his work in migraine treatment, fully dedicated to 22 patients. We did 3-day trials of intense IV protocols. Some helped. Some hurt. Some did nothing…or so it seemed. Some people had miraculous success. Others, like me, waited for weeks with no apparent improvement. We went to classes on the physiology of pain, stress reduction, coping mechanisms, art therapy, yoga. We saw psychologists. But out of all of that, one of the most amazing and life-altering parts of this entire process was the 21 other people who actually got what I was going through. REALLY got it. Not “I can only imagine” got it or “I went through something similar” got it, they actually, really, absolutely got it. That was as powerful as the medicine. It was miraculous. Life-altering. Those relationships are still some of the most important in my life.

Dr. Joel Saper, photo courtesy of MHNI

My time at MHNI was also my first experience with a real headache clinic. The results were profound. If you combined all of the improvement from the previous 5 1/2 years, ridiculous number of medications and treatments and countless doctors, it was only a fraction of the relief I got from the protocol the MHNI doctors found for me.

So why am I still a chronic migraine sufferer? Pretty common question. The thing about migraine and all of the other headache disorders is that you are dealing with the most complex thing on the planet – the human brain. Brain chemistry changes CONSTANTLY. So to think that finding something that works for the moment is the same as finding a cure is just naive. What works now will hopefully work for a while. But it is unlikely that it will work indefinitely. For me, it was about two years before the efficacy of my drug protocol started to nose-dive. But when it did, it didn’t take long. It was excruciating. Both physically and emotionally. I just knew that I couldn’t go back to that level of pain every day again. And certainly not with the hours I was working. I was right. Something had to give. I was battling my HMO to allow me to go back to MHNI even though they were out of network while still trying to keep things going at home and at work. NOT sustainable. I started missing work. A lot of work. In fact, I used up all of my FMLA days. I had to take each day I missed without pay. FINALLY I got the go-ahead to go back to MHNI. I went on short-term disability, figured I’d be there for 3-4 weeks and would need another 3-4 to recover before coming back.

If only it were that simple. My second month as a patient at MHNI didn’t yield the incredible results the first one had. In fact, I was not better at all. Short-term turned to long-term disability. My financial situation deteriorated. My emotional state plummeted. I became essentially non-functional. If I got from my bed to the couch downstairs it was a big accomplishment. This went on for a couple of years. I became suicidal. I was treated at a trauma treatment center for three weeks. My emotional state improved while my physical state continued to deteriorate.

Then I moved. There were many factors that brought me from northern Virginia to central Florida, but the biggest thing (healthwise) that I got out of it was a new doctor who profoundly changed my outlook, my options, and delivered (to an extent) on promises of relief. I’ve been with him now for about two years. I’ve had several surgeries. I am better. I am not cured. I am not pain-free. But I am better. And more than that – I have hope. I often get the most amazed response to that statement. After more than 14 years of chronic pain, how can I actually be hopeful? Well here’s the thing…I had a surgery that did not exist when my condition began. And it has helped me. Not in the ways or to the extent that I was led to believe, but it did help. So why would I not assume that this incredibly complex science being explored by some of the most brilliant minds in the world would not continue to advance? It will. And I will continue to reap the benefits of that progress.

So to all of you out there at whatever stage of chronic migraine or cluster headache or whatever other disorder – hold on. Keep going. Find a good specialist and keep your expectations in check. Progress is possible and there is reason for hope. And for all of you out there who are “old hats” at this chronic pain thing – reach out. There are people who need you. None of us is alone. There are others – many others, who are going through the exact same thing as you. We deal with the same challenges, the same questions, the same stigma, the same need to not be alone in this battle.

So here’s to better science, less pain and many new connections!

 

 

When Blogging Works

Most of us blog with a purpose. We hope that by sharing our experiences we will touch lives; we will inspire, or give hope or educate. I hope that by sharing my journey as a migraneur there will be people who read this blog and realize that they are not alone in their pain, that it is our right to stand up and fight for fair treatment by employers, insurers and society.

Guess what…BLOGGING WORKS!

In addition to the responses I’ve received from other bloggers and readers in recent weeks, something reallly amazing happened! A woman I met a few years ago (in real life…the kind with actual face to face, hand-shaking type stuff going on) contacted me via Facebook. She wasn’t even sure I would remember her, but she read my blog and she took the time not only to comment on what I had written, but to share her own migraine experience. I was so touched…and so HAPPY! Let’s be clear, I wasn’t skipping around my living room because I’d found another person living hellish condition – I’m not that evil! But as a direct result of reading this blog, she is no longer alone in her migraine experience. This condition that so often leaves sufferers feeling so alone is no longer going to rob her of the comfort of having someone in her life who understands what she is living through. To me, if nothing else ever comes of this endeavor, it has already been entirely worth it.

We chatted about pain patterns, depression, the financial burden of this condition, rebound headaches, alternative treatments, hormone therapies, diet. I’m not sure which one of us got more out of that conversation, and I suppose it doesn’t really matter. The important point is that we both have one more person in our migraine support network. And blogging made that happen! So bloggers, keep blogging. And readers, keep reading. Here’s to all of the many inspired connections that await us!