ID: A woman with her hair in a top bun laying on a white pillow and almost completely covered by a white blanket with only her hair showing.

You know what?

This is all really hard sometimes.

I joke around a lot. I look for humour in every situation I find myself in. I smile and laugh and reassure everyone that I’m fine. And in general, I am. I am very proud of how I handle what comes my way. But sometimes I think I focus too much on how important it is for me to be proud of how I handle myself, how I control my reaction to the very real pain and fear that come with having a disabling illness that is changing basically every part of my life. I think that maybe I’m always a little too uncomfortable to sit in that unease for too long. Which makes sense. I’m uncomfortable almost every moment of every day, so why would I deliberately want to put myself in a spot that adds to that discomfort? I get why I do it. I get that humour is my coping mechanism. And it really truly works. I am happy and I am okay almost all of the time. But I think I need to give myself a little more grace. I need to sit in the dark a little longer and just take stock of things before I desperately feel for the light switch. I just need a moment to think about how much has changed, how much pain there actually is in my body and my heart, how unfair it can all feel when I’m sitting in bed and watching certain aspects of my life go by without me. 

It’s hard to watch my husband and my friends move forward in their careers. I am so happy for them, and I love that they are finding their grooves and being recognized for the hard workers they are. I’m extremely proud of all of them. But it’s still hard that I can’t share in those same feelings for myself. That I finally had a glimpse of the career that I wanted, that gave me passion, where I felt I could shine and grow as a thinker and a doer, and for it to be taken away so quickly. It’s hard that I am not in a place where I feel like I could ever start reaching for those goals for myself again. It’s hard to think of how many rungs I’ve fallen down that ladder that meant a great deal to me to climb.

It’s hard to watch others go on vacations or even start planning the logistics of one for myself in more detail than just dreams of where I want to go someday. Travelling was so important to me, and still is, but it looks so different to me now. It will be hard work now. It will involve lots of luggage and mobility aids, lots of staircases I have to wait at the bottom of, lots of compromises I have to make because my legs won’t get me where I want to go and the built environment doesn’t feel a great sense of urgency to right that wrong for me. Vacations can still be fun but there is a new anxiety clouding it all, one that involves a great deal of planning to ease those feelings. Somedays I really truly mourn the loss of spontaneity that comes with being disabled.

It’s hard to get used to new mobility aids. I love every mobility aid I have and I feel extremely grateful that I’m in a position that allows me to obtain what I need. But each new device is a symbol of my body not bouncing back, moving further in a direction I had never pictured myself moving in. And those are the big picture metaphors that crutches, rollators, wheelchairs, and braces represent. But there is also the mounting pile of small picture, real life considerations of needing to rely on these things. Which device should I use in which situation? Can I get through this store? Can I try walking today because walking is good for me or will that put me back further in my recovery when I pull a muscle or pop a joint out and aggravate my aching body? Do I have to ditch the thing that makes me feel better physically so I can do a thing that might make me feel better mentally but is not accessible to me? It’s feeling trapped. It’s feeling like my body is changing at a pace so fast that the rest of the world can’t keep up to it’s needs, can’t provide space for me. It’s feeling like I’ll be left behind somedays. 

It’s hard waiting. Waiting for answers that might help me in some way regain some of the independence I once had. Waiting for confirmed diagnoses so I can fit nicely into a box after so many years of hovering just outside the lines. It’s hard when I feel powerful and in charge of my health and my body and then I have to sit around for 3 years waiting for a letter to show up in the mail with a date and time for an appointment that could change things. It’s not AS hard now that I’m being treated for EDS, now that I don’t live in constant fear that I’m on the wrong medications because my treatment doesn’t involve much medication. But it’s still hard not having all the concrete answers you ask yourself about your body and why it works the way that it does.

It’s hard getting used to interacting with other people as my disability becomes more visible. It’s hard navigating the stares of strangers and the questions about my body that feel so personal that each one is like a punch to the gut, and like someone is flinging open my dressing room door while my pants are down around my ankles. It’s hard feeling like a spectacle when I just want to blend into the crowd. It’s hard when I probably am blending into the crowd but my own insecurities make me feel like I’m a spectacle. It’s hard feeling like I can’t exist in public without being a teachable moment for people who don’t know how to act around someone like me. This is all still new to me and I’m still learning.

It’s hard getting used to my disability as a part of my identity. Getting to a place where I feel like my disability is part of my identity has been very rewarding and therapeutic for me, but it’s still hard. I have to unlearn so many things. I have to reconcile my pride for my body exactly as it is – my pride for being disabled because I feel so passionately that it is not a negative thing and that is has made me a person that I like more than before – with the sadness I feel for having gotten sick in the first place. 

It’s hard being this vulnerable. It’s hard opening myself up to strangers on the internet and friends and family alike. It’s hard to balance the inevitable group of people who think: “wow, I couldn’t imagine pouring my heart out like that on a blog for everyone to see,” with the group who feel a lot of the same feelings that I do and show gratitude that I’m willing to put those feelings to page like this. 

There are so many incredibly beautiful, funny, light-filled moments in my life. Too many to count or include in a blog post that is already too wordy. And that’s such a great thing to be able to say. When I sit back and take stock of everything that has happened in my life in the last ten years or so, the memories that flood to the front of my brain are the ones filled with love, laughter, and every other positive cliche word you’d find on a living room wall decal. The feelings that I’m focusing on in this post do not take up the bulk of my time and energy, thankfully. But I don’t want to do disservice to them, I don’t want to pretend they aren’t there. I don’t want all of this to seem like it isn’t really heavy for me to carry. I don’t carry it on my own, but it’s still a lot. It can still be really hard. I’m glad that today, as those feelings surfaced inside of me, I sat with them a little longer than I normally would. 

It’s really hard. But I’m okay. And I’ll be okay. And I’m happy.  And I’m strong. But it’s really fucking hard.
And that’s okay. 

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