From isolation to connection

Alright, I admit it. I’ve been hermitting.

It’s something that tends to happen every couple of months for about a week or two. I don’t leave my apartment for several days in a row. I feel overwhelmingly fatigued, achey, and have trouble focusing. I avoid writing back to friends or making new plans, because I just don’t feel up to it. My only contact with other people happens over the phone or computer. I notice nests of dirty dishes being built around me, and I feel very isolated and alone.

Just as I start to grow concerned, I typically realize that I’m actually in the midst a symptom flare which only becomes obvious when I attempt to do something other than move from my bed to my couch.

So I take the time for some good old fashioned TLC and then, if and when things start improving, I push myself out the door and back into my regular life.

Often, this fun process is triggered by hormonal or weather changes, but it can also happen if I’ve pushed myself too hard, or for mental health reasons. The catch is that, whatever caused it, hermitting can lead me to develop issues in pretty much every sphere by being alone and inactive, regardless of what triggered it in the first place.

This time, a number of things contributed my current struggle. I pushed myself way too hard doing exciting things like speaking at the ILC conference on EDS (which was pretty amazing and I’ll be writing more about it another time), as well as singing at a small studio recital – my first time singing in public in almost four years! These events were absolutely incredible, but they did take a lot out of me, which was complicated by the fact that I’ve been dealing with muggle sickness for almost 2 months now on top of my usual chronic symptoms.

If you haven’t read Harry Potter, or if you have, but still have no idea what I mean – I consider muggle sickness to be the kind of normal, everyday issues that people who are generally considered to be ‘healthy’ deal with. Things like the cold and flu and common injuries. In my case, I had a sinus infection, and then severely sprained my ankle, making me unable to get out and about very well for the past several weeks. I can’t express how frustrating it feels to be bested by such mundane issues when I’ve worked so hard to craft a life within extraordinary and rare parameters.

So I’ve been hermitting, watching the grey sky and swaying, bare branches on the trees outside my window, feeling frustrated and alone.

But I have to say, as much as I am significantly displeased to be dealing with muggle sickness, it has provided a little window, a small ray of light.

When I tell people that I’m dealing with a really bad sinus infection, they know exactly what I’m talking about. When I say that I severely sprained my ankle and can’t fully walk on it yet, they are able to understand exactly what I mean. Perhaps not the nuances of how those things interact with my existing symptoms, but still. They are equipped to be able to make sense of it.

And that gives me a lot of hope. We tend to think of people who deal with chronic illness as being separate from those who don’t live with it. We tend to think that there’s no way others can understand.

To a certain extent, that’s true. None of us can truly understand each other’s unique experiences. But there is a middle ground, a ground where some much needed empathy can take place.

Every woman who has ever gotten her period knows what it feels like to have to push through tasks on limited energy. They know what it feels like to have to plan for something unpleasant on a regular basis, making sure they’ve packed tampons or pads, and perhaps some advil. Many deal with overwhelming cramping each and every month and associated symptoms such as migraines, fatigue, muscle and joint pain and stomach problems.

Every person with a food allergy or intolerance knows what it’s like to have to plan meticulously – checking for ingredients constantly, calling restaurants in advance or having to constantly ask for breakdowns of ingredients. They know what it’s like for simple things like grabbing a bite to eat with friends to not be so simple.

Every person who has ever injured themselves and needed some time to heal before being able to resume their regular activities knows what the experience of having limited ability is, at least for the time period that they were injured. It isn’t such a great leap for them to extrapolate from that and imagine what it might be like for that experience to last every day, forever. The same goes for every person who’s ever been sick.

So while we don’t all experience chronic illness, pretty much every human being has experienced something that can help them begin to understand what it’s like.

And in a time when the world feels so divided and so full of terrifying, virulent distrust and hate for anyone perceived as ‘other’, I think we can use all the connection and understanding we can get.

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