Learning about the perspectives of chronic illness advocates.
According to the World Health Organisation (WHO), over 1 billion people worldwide experience a form of disability. Through having Lupus, I take great pride in advocating for chronic illness and disability. I can shed light on my own experiences, the ones unique to me, and broadcast them for the world to see. Through my advocacy, I have ended up in a lovely and supportive community for chronic illness and disability, all advocating through their Instagram pages to spread awareness and fight stereotypes. These are Iman, Lauren, Allie, Haley, Nia, Eli, Olivia and Bev, and many more. There is a whole range of chronic illnesses and disabilities, where even if two people had the same condition, they would not experience it in the same way. Across the people I spoke to, we all had multiple conditions: Lupus, POTS, fibromyalgia, ADHD, anxiety, Ehlers Danlos Syndrome (EDS), Stills Disease, OCD, Mast Cell Activation Syndrome, epilepsy, endometriosis, and much more.
A normal day for individuals with chronic conditions is extremely inconsistent and unpredictable. It is critical for us to stay flexible and keep on top of things. Iman speaks of the importance of “sleep, meals, and hygiene,” which is sometimes quite hard for people with chronic illnesses, as a typical day is waking up, eating, and taking meds before being able to do anything else. Allie must remember to take all her medications at the right time and monitor and respond to symptoms, something extremely common for us to have to do. As well as this, she is also connected 14 hours a day to a tube that feeds into [her] intestines. Many of our days are pain-free. Olivia mentions experiencing pain all day… roughly experiencing 12 subluxations (partial dislocations) every day ranging in joints from [her] ankles, wrists, hips, shoulders, thumb, and jaw.”
It can make it rather exhausting for us to be able to live as ‘normally’ as we possibly can due to our chronic conditions prohibiting us from doing so. When Haley isn’t sleeping (for 12 hours), she usually works for about 6 hours, where she states, “the other 6 hours I try to spend eating, chatting with friends and family, and catching up on fulfilling activities… trying to be a semi-normal and productive human.” Doing anything can often take every ounce of energy away from us, and one of the best things for us to do is rest. Nia gives herself time to rest, take naps, and do low-energy activities like watching TV, crafts, and writing. “I try to do what I can when I can, but it’s certainly not easy, and it can be hard not to feel frustrated when your mind wants to do a lot, but your body won’t let you!” she says.
The thing is, when it comes to chronic illness, it affects so much of our everyday lives. We physically (and mentally) cannot do the same things as others. Perhaps we can’t at all, or it takes us longer, or if we actually manage to, it takes up so much energy. Lauren is mainly “on the couch all day unless [she] needs to get up to get food.” Throughout [Bev’s] day, “[she] rotates between working for 20-30 minutes at a time, then resting because sitting is rough on [her] body. For Olivia, “being in constant pain takes a lot of energy that I already don’t have, so if I have days where I’m out doing things it can take me up to a week to recover.” But you get used to it and pick up a thing or two.
Speaking from experience, you learn so many things from having a chronic illness, including parts of yourself. For example, Eli came out to themself as trans. Many of us (who weren’t born with a chronic condition) would have taken our healthy bodies for granted; where Haley talks about how she “thought she was strong before having a chronic illness, but [her] resilience is something untouchable, and something [she] never knew [she] had. Bev “learned how to be less of a people-pleaser because [her] body literally prevents [her] from doing some things [she] would normally push [herself] to do. Many people with chronic conditions commonly share having to learn to pace themselves, navigating a new narrative making it more difficult for us to live the way we used to. Haley learned how to slow down, “take life as it comes instead of rushing through each moment because I don’t have the energy to rush anymore.”
It can often be exhausting, even isolating, to live this way as we don’t always have institutions by our side. While helpful (at times), the healthcare and education systems can sometimes be our worst enemy. Allie “has to show up to doctors ready to fight to be heard.” But one way all of us have found a voice is through advocacy. With that comes a community. Many of us have some support network, where Lauren mentions, “you learn who really cares about you,” but there is something relieving about being part of a community of like-minded people, all striving to raise awareness for us.
While she used to want to be a doctor, Olivia feels [she] learned so much more and has been able to help the community more, being disabled. She states, “If even a fraction of the things that happen to disabled people happened to non-disabled people, there would be education on the subject and change. Having a disability has taught me to be involved in advocacy, not just for our community but also for other marginalized communities. To learn from lived experiences and most importantly, to listen.” It can be particularly isolating when you feel you are by yourself if you feel negatively encompassed by your thoughts and feelings. To feel you are the only one going through things like grief of parts you miss or lost.
Grief is something everyone in this community knows well. Grieving your past, feeling left out, and participation not being an option due to lack of accessibility. ~ Iman
This just means having a community can be extremely rewarding. Through her voice, Iman learned how to voice [her] needs and the importance of accurate, inclusive communities and representation. Allie notes [she] is not alone and “many people are struggling with similar things. It just sometimes takes a little extra effort to find them.” and Eli “learned the importance of community, how critical interdependence is to our survival – and for that, I am eternally grateful.”
At the end of the day, every person living with a disability has their own narrative. With just a small snippet of people who are in the same boat as me, you feel less isolated knowing other people (unfortunately) feel the same way as you. You realise you don’t have to face this alone; there are people who understand what you are going through. It is a privilege not to have to try to feel what it is like, but the world of chronic illness and disability is massive; you would just never know unless you tried to look.