Turning Embarrassment Into Strength

2020 has truly been something. I have admittedly been too tired, too stressed out, too sick, and too sad to write very often. Living with migraine and comorbidities prior to this year was already very draining, but this year took my desire for daily adult nap time to an entirely new level.

What have I reflected on?

Thinking about the past few months, though, I’ve found myself reflecting on the fact that part of why my voice has felt small is not only the adversity that many of us faced this year in the global pandemic but also the grappling with and navigating shame and embarrassment within myself due to heightened aphasia.

How have my migraine attacks changed?

Over the past few months, I’ve found that the extra stress, anxiety, depression, and fatigue along with living with migraine has resulted in more frequent and heightened migraine attacks. I’ve noticed, in particular, that my speech has not quite matched the thoughts in my head, and it has been embarrassing. Not only that but my thoughts get all jumbled too. I’ve written about dealing with aphasia before and how it is so important to practice patience in communication.

How has my aphasia made me feel?

My most recent experiences with aphasia have been so frustrating, though, that I think about it every single day. It wasn’t until recently that I put together that I was, in fact, feeling shame and embarrassment and how much of a toll it has taken on my mood and wellbeing. I’ve found myself struggling to have even the shortest conversations without struggling for words, stumbling over them, and saying completely different things than I intend to. It’s like I am learning to speak for the first time.

Aphasia is when someone loses the ability to understand or express speech, and is commonly expressed as something folks in the migraine community deal with. For me, it has been the bane of my existence lately.

What impact has being virtual had?

It seems almost ironic that seeing people face-to-face a lot less has created more pain with migraine. I thought less abrasive environments, less communication, less driving, and less noise would do wonders for me, but in the context of social distancing and communication, moving to almost entirely virtual with friends, family, and in the workplace, I find myself struggling even more these days. Part of it could be due to the fact that now, I spend so much time on screens just to communicate with anyone at all.

What have I struggled with?

One heightened experience lately has been a clear and sharp decline in my ability to have even the shortest conversations. At work, for instance, I now opt to use the chat function more in meetings because when I try to contribute orally, it is all just a jumbled mess. I oscillate between being excited to share my ideas and being completely embarrassed because they don't sound 'together.' Between having my camera turned off because I am usually laying down with a cold compress on my head and using the chat function, I feel as though I am giving off the aura that I do not care, which is not the case at all. It is truly embarrassing and has been hard to push through.

What am I ashamed of?

I decided just recently that I needed to really sit with what has been happening inside of me. I’ve lived with migraine for so long, and in all of the years I have navigated this awful disease, I have found seasons of resilience, power, acceptance, and strength. This season has lacked so many of those characteristics, and I wanted to get to the root of it. I asked myself, ‘What do I have to be ashamed of?’ Migraine is a disease that impacts millions, I am not alone in my experience, and furthermore, I am not defined by my ability to speak clear and concise sentences in the midst of an attack.

How have I been taking back power?

While I know these things to be true, the feeling in my gut about myself has still been less than sparkly. One thing that I think has helped is naming out loud when I start to feel embarrassed and negating those thoughts with positive affirmations. During work calls, I find myself apologizing, for instance, over and over for saying the wrong word or taking too much time in calls trying to ‘get it out’...but I am working on sitting with who I am as a whole person and asserting that woman in the spaces I am in. I have just as much right to be myself, migraine, aphasia, and all. This simple acknowledgment has helped tremendously in taking back my power from embarrassment or shame.

What did my co-worker remind me?

I have also been encouraged by family, friends, and coworkers that those feelings I am having are not indicative of the way they see me. A coworker even recently told me I have nothing to apologize for. Imagine my shock! Here I am, agonizing over my speech, and they are just interested in my ideas! Sometimes hearing affirmation from the outside can go a long way in getting us back in the right mindset (a note for our non-migraine experiencers in the community!) I have plenty to offer, even if it is in a chatbox, and I am pushing myself to remember that.

How can I change the stigma around me?

I think sometimes as folks living with chronic pain, we can get stuck in an abyss within ourselves, and it is true that outside pressure can add to that. For every coworker who speaks up in support of me, there are plenty of folks who subscribe to the mentality that we must be fast, efficient, concise, and energetic all of the time. The truth that has rung true for me lately is that I can work to out-influence those kinds of stigmas within my heart by leaning into those affirmations from myself and others. Through this practice, I am turning embarrassment into strength.

How long will it take?

Truth be told, this is not going to happen overnight. Seeing myself fold into a place where my voice is becoming small has occurred over several months, has included a lot of emotional and physical pain, and is not going to simply go away through these practices alone in a day. The aphasia may not go away at all. I am committed, however, to trying to dig my way back out and speak in ways that are accessible to me, especially as I know there are so many of us struggling to make our voices heard.

How will I find confidence?

As a small child, I was often called a mouse and told I had an incredibly soft voice, and I think, in hindsight, a lot of my conditioning growing up was an aversion to being overly present and avoiding loud things because they hurt, literally. It took a lot of undoing, in the first place, to lift my voice, and now it feels like starting over. I am encouraged, though, because I’ve already done it before, and I know I can learn to be confident in my voice again, literally and figuratively. Heightened aphasia, which accidentally turned into me not wanting to speak at all, will not be the defining characteristic of my last few months, my strength in learning to live with it will.

Have you experienced a shift in your migraine journey that felt contrary to your own beliefs about yourself? How did you navigate that shift? Let’s discuss in the comments!