Migraine

When I Say I’m An Advocate…

Image Description: girl with blonde hair wearing red “The Mighty” shirt and jeans sitting on white coffee tables surrounded by things that represent her including pillows, old vinyl records, plants, and a Buddha head.
Photo edited by: Kaitlyn Berger

The concept of being an advocate is something I struggle with all the time. I’m constantly feeling like I’m doing it wrong or don’t dedicate enough time to “advocacy” work to claim the title.

But I’m here to tell you that I am absolutely claiming the title and defining what it means to me.

This last week, I was prompted to explain what it means to me to be “Mighty” and I won’t spoil what my answer was, but over the last month I’ve stepped out of my Contributor role and into a Community Leader role, and the question being asked means a whole lot.

I even have a new verified tag associated with my Mighty Profile:

Image description: heading on the Mighty @alextomlinson with verified community leader banner

So, when I say I’m an advocate…

I’m not claiming to be the most in charge or even a leader in the migraine community.

I am not an advocate the way I see so many other people being advocates.

I am an advocate…

For the people who need a comfortable place to land. For the people who don’t have a place to turn when the whole world seems to be against them, when they’ve lost all hope, and simply need a safe place to be themselves.

I am an advocate…

For the patients who haven’t found their voice. I am here to help you make sense of whatever your doctor just told you. I am here to let you know that your symptoms are valid. I am here to guide you to finding a new doctor. I am here to help you understand what your symptoms might be or why the pain isn’t always the same. I am here to help you understand your health care and the options you have available to you. I am here to go with you to your appointment if you need someone there who understands and cares.

I am an advocate…

For people desperately seeking new information. Whether it’s someone who is lost because their treatments are failing or they don’t trust the medical professionals. I am here for the people who want to look at more natural therapies, who want to understand what holistic options are available and what lifestyle “changes” actually means. For the people who don’t want to live like this anymore, but aren’t comfortable abandoning all of their current therapies. Because being an advocate doesn’t mean I know what’s best for you, but it does mean I can help you know what options exist and how you’ll know what your body is trying to tell you.

I am an advocate…

For the moms. For the caregivers. For the lovers. The people who can’t find a way to communicate but choose to love unconditionally and want to seek out guidance. I am here to be that voice that you need to hear from a different perspective. I am here to show you how we’re all guilty, and we all feel inadequate, and we all need to take a little more than we can give sometimes.

I am an advocate…

For the people who don’t have access to the same resources that I do. My site – the Migraine Resources tab – is 100% free. I am here to share my journey with you and what I learn every step of the way – whether it’s from bad reactions to medicines or recognizing my needs when it comes to finding a certain type of therapist. Not everyone could access the Migraine World Summit, but I had incredible friends and family help pay for my access, so I shared what I learned with you in 4 simplified posts (Part 1, Part 2, Part 3, Part 4). As I continue to venture through the MENT Protocol, you will get updates and most definitely a full review after the program comes to an end. I am here for the people entering the world of social security, who don’t even begin to know where to start or what to say, who certainly can’t afford a lawyer to help with the process.

I am an advocate…

For the people all over this world struggling and wanting to know they aren’t alone. As of June 18th, 48 separate countries have encountered my words. I am here for the girl desperately trying to make it through high school knowing she keeps missing more and more days, but also knowing there’s certain medications she’s too young to be on. I am here for the woman fighting to keep up with her full time job that’s working her overtime while she’s trying to take college courses. I am here for the guy who slowly recognizes that what was once just a headache has evolved and may be more serious.

But most importantly, I am an advocate for the people.

All too often, advocates are exclusive.

I don’t care if the person on the other side of this screen even has migraine. You can be anyone, with any condition, anything impacting your life, anything that you aren’t fully equipped to manage on your own yet, and I am here.

I want to make you feel heard and appreciated. Even if you never open up a single blog post, I want to make you feel like you matter and can make a difference in this world.

I never want to be the advocate that doesn’t respond to people reaching out or offering their lived experience in response to something tweeted or shared. I never want to be the advocate that condemns another person for doing things differently. Hell, I’ve gotten some nasty messages because I’ve worked so closely with The Mighty and did so without compensation. What I wrote, would be in the public eye regardless if they published it or not – so why condemn people for doing their “good deed” differently?

I want to be the advocate that inspires you.

I want to be the “migraine queen” Alyssa so kindly referred to me as, not because I have this condition, but because I am known for being the go to person when some stranger expresses they don’t know what to do when they have a migraine.

I want to offer encouragement and support without doing what so many motivational speakers and other advocates do, and that is place full blame on YOU. You are not to blame for your pain or disability, even if there are steps you can absolutely take to be more responsible for your health and healing – you are NOT to blame. Speaking down upon others gets you no where.

One day, I will step out of the advocate role and into the activist role. And maybe that’s where people struggle with defining “advocate” because so many try and do both at the same time, but I think doing both compromises each effort.

I will be an activist, because apartment complexes shouldn’t only offer 1 ADA compliant room in the entire complex and be allowed to call themselves “accessible” or an Equal Opportunities Housing complex.

I will be an activist because ADA guidelines haven’t been amended since 2008, and has yet to actually take into account real life needs of the millions of people who rely on it.

I will be an activist because not one elected official ever makes an effort to include the disability population. I have a voice, and it will be heard and it will be loud.

But, for now I am an advocate because healing is my number one priority and being an advocate means encouraging others to not allow their sickness to define them and to help them on a path to either total or mental and spiritual healing to allow them to live the lives they want to live.

I want to be the advocate that isn’t just some face you recognize and associate with migraine and disability rights, but a person you feel comfortable calling your friend.

A.


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11 thoughts on “When I Say I’m An Advocate…”

  1. Wow. Simply Wow. Last year at this time your were anxiously trying to figure out how on earth you could keep the job you love while going to school full time and living on your own knowing your migraines were only getting worse each week. The decision to leave it all behind and move back home to focus on your health was probably the most difficult one you’ve ever made. And now here you are days away from moving out on your own again, spreading your wings to take control of your life as you strive to get to the point where you can be fully independent one day. Watching you as a little girl climbing to the top and playing in the big old maple tree out back I never dreamed your life would take the direction it has. But it’s no surprise that you continue to reach beyond the norm to accomplish just about anything. I am beyond proud of the way you continue to reach out to help others and make the world a better place. With your new position, as well as other opportunities coming your way, I have no doubt you will make a huge difference in our world. The world is a better place because you are in it. Love you so much.

    Liked by 1 person

      1. After reading your post, you’ve definitely got it in you to be a motivational speaker! You bring a message across very powerfully and the world would be a better place with more people like you! πŸ’š

        Liked by 1 person

  2. Thank you. My son has a severe disability. While advocating for him, or since I’ve been advocating for him, I’ve noticed how many people struggle with no advocate. Or rather, there struggle is compounded by this fact. He’s the kindest, most loving, happiest person I know, despite it all, yet he needs advocacy badly in a world that is not built for him and often does not understand him. Thank goodness for other advocates, like yourself

    Liked by 1 person

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