Finding Your Voice Part 1: A Ripple That Makes a Difference
“Gentle hugs to you!"
Angrily brushing away the tears that welled up in my eyes, I tried to figure out why such a simple statement made my heart ache.
Decades of chronic migraine and lack of understanding about a disease that is only now just starting to come out from the shadows had programmed me to accept that most people simply did not understand and… that I was alone. Alone in facing symptoms that could not be controlled and were too easily triggered. Symptoms that had left a trail of broken dreams in the wake of unanswered medical questions.
A simple comment transformed me
“Gentle hugs to you!”
That simple comment introduced a tiny ray of hope. Hope that maybe there were others out there who understood, who cared. A discovery of people who were willing to take the time to let me and others know that we were not alone.
The journey to finding my voice finally began, and it’s been transformational.
A ripple that spreads
That overwhelm is understandable bearing in mind so little is known about migraine, and there remains a devastating lack of effective tolerable treatment for most people. There’s a tendency not to speak out, a fear of judgment or criticism, the hurt that comes from not being heard, and of course, just plain exhaustion!
But picture a pebble in your mind…when thrown into a lake it creates a ripple, and another ripple, and another. When more than one pebble is thrown in at once those ripples multiply and are bigger! That is exactly what happens when one of us speaks up, and then another, and then more voices are added. Our voices become a ripple that spreads, and the impact can be huge.
Shame, stigma, and fear
One of my biggest astonishments is accepting how long it took to find my voice. With a background in nonprofit and public speaking since my early 20s, this would have been a logical thing to happen. But…somehow shame, stigma, and fear of being a burden to family and friends kept my mouth firmly shut!
The sad thing is that when we don’t speak out, when we don’t talk about what is actually going on with our bodies and migraine, all too often the consequences are not good. We have to keep “faking” being well and “pushing through” unimaginable pain together with other symptoms just to survive.
That not only takes a toll on us emotionally. Physically it can be devastating as we struggle to put a Band-Aid on symptoms that all too often become more complex, more severe, and harder to manage.
Finding my voice
By 2014, between chronic migraine and other pain syndromes, it was becoming increasingly impossible for me to keep pushing through. Finding myself literally a ‘blob on the floor’ most days, I was forced to realize that the face I wanted to present to the world had finally crumbled.
Three and a half years later, after an exhausting but successful fight for disability, I found myself asking, “Is this what life has to offer now? Another 30 or 40 years of this?!”
Suddenly shame, stigma, and fear took a back seat. It was time to find my voice!
A new day!
Learning to speak out and explain what was going on, no matter how people responded, was freeing. Discovering that by being honest about my journey, I could encourage others was a breakthrough!
Realizing that I could actually partner with my doctors and healthcare professionals rather than accept the old parental model was empowering – often challenging, but empowering none the less!
Even more, suddenly I felt less alone, and that was a literal lifeline. People in pain or with chronic illness tend to lose control over many things in their lives. Discovering my voice gave back just a little bit of that control.
Connection, empathy, inspiration
For me, the corner was turned not only as a result of years fighting for something that I was really too sick and exhausted to fight for but also the powerful inspiration of other patient advocates.
My “AH-HA” moment came in early 2018 when the new migraine medications, CGRP inhibitors, were on the verge of FDA approval. I watched an advocate speak out at an ICER event while she was having a migraine attack. She was losing her words and struggling to get through her presentation. All I could think was, “She’s just like me! If she can do it, then I can too!”
Since then it’s been a rapid immersion into the world of advocacy. Finding my voice for myself, for others, for my children and future grandchildren. Speaking out so that together we can hope to have a better future.
It’s the refusal to give up on life. It’s a way to say that everyone, no matter how much pain they live with, has purpose and value. However, it has been the community connection which has been a literal lifeline. It's the discovery that I am not alone that has been transformational in helping manage an incapacitating disease for which there are so few answers. Maybe that connection with others has been a lifeline for you too?
Speaking out is scary
It seems strange to say, but speaking out can be scary. We aren’t sure how different people will react. Experience has often programmed us to expect the worst, and we don’t want to be judged.
Also, in some way, just by verbalizing what is happening it can feel like accepting it - and acceptance is the last thing we want to do! We want change! We want our lives back!
Honestly, no matter how we speak out - whether through sharing a meme or article, talking to family and friends, advocating for ourselves with healthcare professionals, asking for accommodations at work or school, even writing articles or public speaking – I’m not sure this fear ever goes away completely.
It’s easy to get emotional, and the temptation to crawl back into the safe isolation of bed, blanket and pillow can be overwhelming. Some days we give in to that temptation, and that’s okay!
A ripple that makes a difference
Discovering what we can actually still do while living with migraine, can take time and encouragement from others. It takes patience in adapting to a new normal and setting healthy boundaries. It means learning to be kind to yourself and making wise decisions.
Patient advocacy means hoping to be a drop in an ocean that makes a ripple. It’s the hope that this ripple will create another one and another. And, eventually, that the impact will be huge, really HUGE.
For me, patient advocacy means making tough choices to say no when I really want to say yes. It means embracing the successes and learning from the failures. Ultimately, it’s me saying, I am a person - I have value - my life still has purpose - and I’m going to use my voice in whatever way I can to make a difference.
You can do it too!
We’re all in this together: we hurt together, we get discouraged together, we encourage together, and together… we can learn to speak out! Remember that your life still has value! Your life still has purpose! Every ripple we create individually and together is making a difference!!
Do you find it hard to find your voice? Who is it most challenging to speak up with: family, friends, in the workplace, in school, with your doctors? If you want some ideas on how to speak out and where, coming soon is part 2 of this article: Finding Your Voice: You Can Do It Too!
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