I’m sorry you had to cancel your vacation. And that you can’t celebrate your birthday with your friends. I’m sorry you can’t go out partying this weekend. Or that the conference that you were looking forward to so badly got canceled. I know the feeling!
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Trust me – if there’s anyone that can understand what you’re going through right now, it’s got to be someone with a chronic illness. Why, you may ask! Because we have experienced extreme isolation due to our illnesses. We have had to live within the confines of our homes or even worse, the 33.3 square feet of our beds month after month, and sometimes year after year. So much so that our beds and couches have sunken in the shapes of our bodies from practically living on them.
This is our life every single day with one slight modification; the world continues to go on while our worlds have turned upside down. There’s no outpour of support from the community, school and classes don’t move online, there are no encouraging posts on social media and no video calls from our friends and families. Just our bodies failing us, our lives put on hold for the unforeseeable future, our health dictating every small or big decision we make, daily routines slowly fading away, society forcing us to give up on our dreams, not having a choice but to drop out of school or give in to unemployment, and embracing countless unanswerable questions in our everyday lives.
That uncertainty you’re feeling right now, we are also well aware of that! We wake up each morning not knowing what the day has in store for us. It could be a great day to go conquer the world or it could be a horribly painful day, making it hard for us to even start our day. Perhaps we start our day fine, but half way through we realize we might need to lower our workload or cancel that plan with a friend. Or worse, we might not even make it out of bed! There are days we don’t even have the energy to speak or have a hard time texting because we don’t have the ability to think coherent thoughts. Sadly, these flare-ups come unannounced so all our plans can turn to dust within seconds. And we are left with the only thing certain in our lives, the uncertainty.
The response to COVID-19 highlights the ableism that’s widespread across our society. It proves that employers can make accommodations. That schools can make exceptions for students like us. It just comes down to the fact that the able bodied are prioritized, whereas the chronically ill and disabled aren’t seen as important members of the society. We are the other. The burdens and inconveniences. The lesser. Not worthy of being accommodated!
Don’t get me wrong – my heart goes out to everyone in this tough situation! My hope, though, is that when the world goes back to living their normal lives, nobody ever forgets how they felt during this time. That every able bodied person comes out of this with a little more empathy. A little more understanding of our lives. That we build a system where everyone can truly integrate and participate in the society. That the conversations we are having right now about community and lifting each other up will continue past this pandemic. That schools open up to the idea of making more accommodations for us so we don’t have to give up on our dreams. That employers are just as flexible for us as they’re for everyone right now! That friends and family understand the anger, sadness, grief and frustrations we experience on a daily basis. That live conferences, workshops, and events on Instagram, Facebook and YouTube continue to be hosted because we deserve to be a part of them as well! That exercise, yoga and meditation groups don’t stop hosting online for those of us that are too sick to attend in person. And that society welcomes us into their worlds like we welcomed them into ours, with arms wide open.
The choice is yours – you can either let us fall behind in this rat race of life or help us adjust into our already complicated lives by reducing our sense of disconnection, rumination and despair. However, remember that wasting valuable resources and insights that we could potentially provide to our society is not only unfortunate but also shameful! And it would be a win for us, as a society, to go beyond the current accommodations provided to the chronically ill, and explore various other ways to be of help. These can come in the form of more work from home opportunities, job restructuring, having a flexible work schedule, and being given the option to do modified duties. More importantly, we need a system in place where the chronically ill can receive the same amount of support and accommodations that those with a visible illness do because Lord knows the pain I go through when I have to stand for an hour on the train! And how guilty I feel if I sit on a seat for people with disabilities and get looks from everyone since I don’t “look” like I’m ill.
I understand I might be asking for too much from all of you that are currently living in sadness, fear, doubt and anxiety, especially because this isn’t something that directly impacts your life. However, it feels like the only chance we will ever have to make you understand our lives. To remind you that there are so many of us that could be adding something valuable and meaningful to the society if given the right opportunities. Together, we can have a brighter future.
Welcome to our world! And enjoy the fact that you’re just a guest and not an actual resident!
Love and spoons,
Tanya Derstine says
Thank you so much for sharing your heart. I have tried to convey this to others but failed to do it in a way they could appreciate what I was saying. It’s hard listening to people moan and groan all the time about how inconvienced they are and how they hate the situation we’re in knowing that I and you, cannot change our situation or go back to normal. I truly appreciate your honesty, forthrightness, and elegant way of putting into words which I wish I could have said.
Thank you so much for the sweet words. I’m so glad they resonated with you! Although, it might be frustrating to hear people complain about the current situation, keep in mind that this is the first time they’re experiencing something of this nature so they are bound to react this way! Think back to the time you were forced into this situation for the very first time. It might help understand their situation a bit! It’s also important to validate their feelings before we explain our side of the things to them. Nobody is going to empathize with us if we don’t do the same.
Sending lots of love and strength your way!