This month is a celebratory month for so many great causes ranging from Pride Month, Men’s Health Month, to my favorite: Migraine and Headache Awareness Month. Throughout the month we’ve got even more exciting days like donut day and corn on the cob day.
Last year, I honored this month by writing about the 5 Migraine Stigma’s that needed to be broken.
This month, I’ll admit I’ve struggled. Sure I could tell a story about someone with migraine, I could tell more of my story, maybe I could focus in on a narrow part of migraine, or combine some of the awareness days to focus in on spreading a message of positivity and hope despite chronic pain…
But, to be honest that isn’t what an awareness month should be about.
I don’t have to tell you it’s not just a headache.
I certainly don’t have to describe what the pain is like.
Instead, I want to explore the areas of migraine that get overlooked and downplayed in honor of spreading the awareness we should be talking about from symptoms and verbiage, to advocacy and healing.
That’s a symptom of migraine?
Aside from the obvious pains and sensitivities, migraine encompasses a wide range of symptoms that aren’t experienced by everyone. Everything from aphasia to cognitive dissonance, to frequent urination and burning eyes, to weakness of one side of the body can accompany your migraine and headache.
Aphasia ~ This can range from difficulty finding the right word to use, or stumbling over your words. In most cases, aphasia is a verbal aura that comes prior to the pain stage of a migraine attack.
Cognitive Dissonance ~ It is incredibly common for people with migraine to also experience mental struggles and hold inaccurate views. One form this comes in is cognitive dissonance and the development of various negative thought patterns that interfere with our day to day life. This can range from automatically thinking about the worse case scenario, to over generalizing.
Frequent Urination ~ (or fluid retention) One of our body’s natural responses to an imbalance involves the way our organs process fluids. Prior to a migraine or during various types of headaches, it is common to feel like you’re going to the bathroom every five minutes – because odds are, you are. On the other hand, during a migraine attack you may notice that you feel dehydrated and aren’t using the bathroom at all. Your body’s response has changed and is retaining the fluids you are consuming. Medicines can also impact fluid retention.
Burning Eyes ~ A symptom I’ve never seen mentioned, but one that I know has occurred in multiple cases is burning and itchy eyes. If your head pain is caused by either allergies or sinus inflammation, it is common that it will be associated with burning or itching eyes.
Weakness on One Side of the Body ~ In some migraine attacks, an individual will experience total loss or weakness in one side of the body. This is known as hemiplegic migraine and mimics a stroke. What’s unique about this symptom is that many people believe the weakness only occurs during a migraine attack, but many people have described the weakness as extending long after a full blown attack has ended.
“Proper” Migraine Verbiage
Spending time understand the “why” behind certain phrases and preferences is incredibly important. At the beginning of my journey with migraine, I recognized the importance of differentiating between my condition and instances of pain. This translated into referring to my overall condition as migraine – the neurological disorder I am afflicted with – compared to a migraine attack – a flare in my pain where I am experiencing a wide variety of symptoms. I really like this differentiation because it helps reinforce that migraine is the condition, the condition doesn’t necessarily go away, but I don’t experience a migraine and another migraine, I experience flares, or “attacks.”
People hate the word headache in relation to migraine attacks, however I think it is incredibly important and does serve a purpose. Migraine encompasses symptoms, and one of the most common symptom is in fact a headache. Much of the severe head pain we experience can also be described as a headache, and not a migraine attack based on the symptoms we are experiencing alongside it. I personally separate migraine attack and headache based on cognitive symptoms I experience and connecting migraine to those cognitive symptoms rather than congestion or eye pain/light sensitivity.
An important distinction can be made between cure and remission. Like any chronic illness, there are actions we can take – lifestyle changes, dietary restrictions, and medicine combinations – that will make the impact of our illness much lower. Our illnesses cannot be cured, but how then do we refer to the thousands of people who have achieved migraine freedom? They are simply in remission, for whatever reason, but have a higher chance of being prone to another migraine attack in the future. I think this distinction is important for those who don’t have migraine as it reinforces that the condition won’t just go away.
Now, there’s a debate within the community regarding how we refer to people who have migraine. How do we describe them? Patients? Sufferers? Warriors? Migraineur? People with migraine? Person who has migraine? In my humble opinion, this is an individual preference. I don’t like the word “suffering” because it has a very negative connotation and you may not choose to be in pain, but you choose whether or not you are going to suffer.
This ties very well into my last point on verbiage… and it touches on the idea as to what “advocates” are really working towards.
Dedicating years of advocacy work towards lecturing a bunch of people in an incredible amount of pain on how they choose to talk about their pain, the words they use to describe the pain and identify themselves, and how we need to have a united front in the words we are using is pointless and can create an incredible burden on those of us in the most pain.
There are some incredible areas that advocates in the migraine community are working towards such as: more government funding, visibility in the workplace, and further education for physicians. This paired with the sharing of our stories and education of those around us are huge strides made every day in our community.
When I think of an advocate, I don’t think of something positive. Those that I’ve encountered don’t interact with fellow migraineurs. They don’t want to hear other opinions. They certainly want nothing to do with individuals who find positivity in pain, who overcome obstacles, who have sought out paths to heal, and those who have healed or gone into remission.
They want to make legislative change, and honestly good for them.
I want to see more people who are sharing their experiences. I want to see more people openly wanting to learn more and spreading a sense of hope. I want to see the individuals who have created new lifestyles – whether they teach yoga or are writers or life coaches – I want to see them continuing to share and uplift those of us actively seeking them out.
You cannot learn anything from me from a picture of an ice pack over my head. That picture can only paint one of pain and suffering, and my life cannot be reduced to that.
You can however, learn from advocates like Kat Harrison (@xokat) and discover an entire new approach to viewing your pain:
A simple post reminding you to not let your hard days set you back. Reminding you that your value doesn’t exist in your pain. Reminding you that we are all humans.
That is advocacy at it’s finest.
Kat reminds me constantly how important it is to be easy on myself, and that every obstacle or bad pain day doesn’t have to teach me something.
So when we think of migraine advocates, I invite you to rethink advocacy.
Look for inspiration. Look for invitations to participate and share your thoughts and experiences. Look for people who put an emphasis on how they can move forward, even if moving forward during the tough pain is simply getting through the day. Look for people who celebrate your healing and your progress – big and small.
Advocacy is learning while sharing what we learn.
Advocates should be inspiring and they should be inclusive of those they are representing.
Advocates should never look down on you for where you go to for support, the communities you engage with, or the opportunities you choose to take. Advocacy starts from the individual. It starts from sharing your story, even in a small way. Advocacy that makes change starts from the bottom and when we embrace the grassroots of the migraine community, we can flourish.
Migraine Isn’t Linear, Neither Is Healing
At some point, we thought it couldn’t possible get worse and then it did. Then we thought we were at our wits end and that this was going to break us, but we persevered. We thought we would be in the intractable cycle forever, and suddenly the air cleared and we were met with freedom for the first time in years.
There are so many ups and downs that come with this condition, and no doctor or well-intentioned friend could ever prepare us for the journey. But would you believe me if I told you the journey prepares us for life?
I’m going to tell you that healing is possible, but healing is going to be different for all of us.
Are we going to heal our pain? Hopefully yes, we will find success and go into remission. Maybe we are going to heal our soul or our heart. Perhaps our healing will come with our family and loved ones.
You have to decide what healing looks like for you.
Healing can simply be allowing yourself to find happiness again and embracing that happiness, letting it engulf you and those around you.
This June, I want you to embrace Migraine and Headache Awareness and see it through a new lens.
Migraine is as unique as each individual that makes up the 1 billion people with it.
Everyone will experience it differently, having different triggers and solutions, which is the most important characteristic. Paying attention to how differently this condition acts can and will prove to be the solution that can bring each of us closer to remission. (Goodbye triptans, hello totally individualized approaches)
Talk about your migraine in a way that represents you. Share what you think is important.
Strive to connect with advocates who have you in mind.
Remember you are in control of how you view migraine, find areas that you view negatively and change that narrative.
Care for your soul. Care for yourself. Embrace mindfulness in your daily life, eating, and interactions.
Don’t be afraid of healing. Let your doctors know you intend to heal, not just hide the symptoms or pain. Be your own advocate.
And spread the awareness you deem worthy of representing the vision YOU have.
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