What Happened When I Stopped Holding It Against Myself That My Pain Is Often Masked

Leafy background with text saying "accept my health for what I share not for what I show"

A little over two years ago, I came home to a dimly lit apartment, curled up onto my sectional and penned out my frustrations. I was caught between emotions and expectations set by so many different people around me.

I was just over a month into my new dream job, coming off of an incredibly successful first month. I was getting ready to splurge on a couch update to really buy something that fit my needs. I was beginning to put together my home office. I was truly living out my dreams while simultaneously having the life sucked out of me.

I had the perfect job. I had great new friends at school and at work. I was building new relationships with family I hadn’t grown up around. I was excelling in school and working to pay down my loans every month. I had secured my own place. I was learning to be adventurous while cooking.

But I was still hiding a bruise a few inches in diameter that was finally beginning to fade from my infusions just a month prior. I was fumbling around at work, guiding and supporting myself with each new piece of furniture I passed. I was doing everything to hide the unbearable pain, to avoid conversations that revolved around my numerous doctors visits a week, my massage and physical therapy, my constant phone tag with the pharmacies. I was hiding it.

And in hiding, I was frustrated. And so I wrote asking the world to stop holding it against me for actually having success in this masking of sorts.

Twenty-seven thousand hits and two years later, and some days I still wish for the same thing. (You can read my original feature piece here: Mighty Article)

Except it is all so different now.

I no longer try to look well. I don’t do my hair very often, and the most effort is usually the night before if I opt to braid it so I’ll have some beachy waves the next day. I probably do a full face of makeup once or twice a month, and on most days I will toss on some powder and a little bronzer and call it a day.

It isn’t that I don’t care what I look like anymore – I absolutely love getting all dolled up – it’s that the effort required and the energy gets sucked up too quickly. So a more natural look serves me well.

And don’t be fooled, I do still get dressed up and prance around in fancy shoes a few times a week, because hey I can.

Looking a certain way doesn’t actually mean much.

I’ve been told I should try and look more sick when I have to see a doctor, but my charts and blood tests, and medical history speak for themselves and having a chronic condition like migraine means that the most bothersome symptoms are not visible. Looking more or less sick won’t change how the condition exists.

When I stopped holding it against myself that I had the natural ability to hide an already invisible condition, I began to stop holding it against others.

This acknowledgment came with a new outlook on how I interact with the world. Letting myself be aware that most people I encounter won’t understand how sick I am just at a glance, was freeing. Acknowledging that it didn’t make a difference from the outside perspective if I had done my face or hair or not, was also freeing.

It opened up an entirely new sphere for talking about migraine and disability and gave me a new confidence when doing so.

Letting go of trying to convince someone you’re sick when you don’t look it, and rather talking plainly about your condition if it comes up as it’s no different than discussing your field of work is life changing.

I know my reality. And I don’t need validation from strangers because they do not provide my income, they do not provide support, and they are not my medical care team.

Letting go of the idea that I don’t look sick, because sick doesn’t look like one thing, meant that I also interacted with people’s responses very differently. Sure there’s always going to be someone who tries to use how someone looks to negate how they feel, but that’s a very different subject altogether. I’m talking about people who comment that you can’t really tell that you’re in pain. Or that they would never know just looking at you.

These small comments are mere observations, because when people encounter a person living with a disease that places such limitations on your life, society has taught us that limitations are almost strictly visible and tend to fit in a little box where you likely use a mobility aid.

But alas, that box doesn’t exist, and to the outside world that box has to constantly be broken and re-imagined before invisible becomes a normal and acceptable part of a disability. And often that box is not broken effectively until we are in it ourselves.

Now, I think less of people who do hold it against me, but more so what is meant by “holding it against me” in the context of support and presence in my life. Since leaving work and school, the landscape of who I interact with is very different, so in turn I’m no longer battling coworkers who think I’m being lazy or trying to get out of work.

The venn diagram of those who hold my condition or their perceptions of it against me and those who lack compassion towards the world around them, is actually a circle.

Being a circle, this actually makes my life a little easier. The spaces I exist in, the people I interact with, and those I want to foster relationships with all have one thing in common: an endless capacity to share love and compassion with all they encounter. Which means that when I do find people who hold my condition against me, even if they are very quiet about it, they don’t tend to remain in my life for long because they don’t extend compassion or grace to others.

So when I think of those now who hold it against me, it’s those who question the validity of my symptoms, the severity of pain, and if the treatments and management methods that I employ are what’s actually in my best interest.

It extends to those who police the word “disabled” and think they have the right to decide when it can or cannot be used as a label.

Most importantly, it’s those who push their “support” for me only so they can weaponize it down the road. Offering help to someone is not a give and take sort of contract. It is an offering, left without expectation.

You don’t donate to a Hurricane Relief fund because you want to influence the outcome of how they apply aid. So why would you grab groceries, or donate to help cover a medical expense with the intent of holding that assistance over someone’s head?

Thankfully, those who do hold it against me are fewer and further between each year.

And two years out, I can actually say the strength of the relationships I had then have for the most part, held up incredibly well.

When it comes to new people I do encounter, reaction to illness also correlates to compassion.

Often there is a healthy amount of curiosity, so if you do share – as I often do – those who respond to your descriptions with acceptance and acknowledgment of your lived experience without being dismissive or disrespectful, are often compassionate individuals.

And I know that we don’t all respond to curiosity in the same way. Over the years I have grown much more open to it because I personally strive to increase general awareness surrounding headache and migraine disease. It’s okay if to you, that curiosity feels like an intrusion or disrespectful, those are your boundaries to set and they are valid.

Perhaps the biggest change is that I’ve learned to extend compassion towards myself, and to extend compassion towards those I may cross paths with. We all have our own load, we carry these loads differently, but in releasing the idea that masked pain or grief means it isn’t there, opens up the chance to respect and acknowledge the loads carried by others.

A.

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