Being Healthy and Disabled
Words by Teddi (they/he/she) and Kelly Mui (she/her)
Teddi:
Being disabled is really weird sometimes. If people don’t know of your bad days, they assume nothing is wrong. I don’t look sick. So maybe I’m just dramatically talking about temporary blindness from migraines, or how I had to relearn to walk to try limit my joint hypermobility. You can’t tell from looking at me that I’ve had these experiences.
There is no reason why I have these health issues, other than my genetics hit the unlucky jackpot. My sister has never had these things happen. Being disabled is the only club that every single person has the potential to join regardless of what happens in life. It’s outside of your control more often than not.
It took me a long time to accept that I am disabled. I talk about being disabled a lot because it is a very isolating experience most of the time. I don’t want others to feel like they are alone in living outside the mainstream. A lot of the time our perspective and comfort is not considered, and that needs to change.
Since I’m a disabled person, I have some wisdom to impart about health:
1. You are not supposed to be in pain every day
If you are in pain constantly, that is not how it has to be. Small issues now can become bigger over time, so it is important to get things checked. When I slipped a disk in my back, I regretted not getting the proper physiotherapy for it. My body will always recognise there was a severe injury to that area. If I push myself, even though it is fully healed, the muscle memory still recognises that the injury happened and I can feel it.
2. Diet, exercise and sunlight have a much bigger impact on you than you would think. Figuring out food triggers can have a big impact. Once you figure out what works best for your body, there is a big difference in quality of life.
3. Being tired or in pain all the time is not how it’s supposed to be.
The hardest thing is that medications can only do so much. Actively caring for your body and mind is just as important as taking your prescriptions properly. I have alarms on my phone to remember when to take each thing until it becomes part of my routine. I knew someone who would put their medications on their shoes so they remembered to take them before they left the house. If it works for you it’s not dumb, it’s selfcare.
4. Being physically unhealthy builds up a toll on mental health for most people. As someone in therapy (specifically cognitive behavioural therapy), there is a point of being mentally ill where you have to choose to get better. It’s not an easy choice to make, and from experience it takes a long time to commit to getting better. It requires lots of little steps, but each one takes you closer to where you deserve to be. I’m never going to be mentally
healthy without managing symptoms and constantly monitoring how I am. That’s because of how chronic pain affects me. I’m a dramatic example of this, but it is important to be able to recognise if you are healthy.
People tend to express guilt when they talk about their own health issues to me. Honestly, I don’t understand why that is. Maybe it’s my autism, but we all have health to consider. Just because my normal is not the normal for everyone else, doesn’t mean I can’t accept someone else also having an issue. Sometimes you just need to complain to feel better. Complaining about health is therapeutic. I get it.
Kelly:
If anyone were to ask what my regular day looked like, they would not blink an eye. But I would easily lose myself to my own thoughts about how radically different my life has been since my condition has developed.
Many people in my life think that I am a person who highly values wellness, which is absolutely true. I fully believe that looking after yourself is one of the best things you can do. I am also fully aware that students, who are perpetually stressed and tight on finances, are not always capable of practicing wellness. For many, the reality is a lifestyle of two-minute noodles, toast, caffeine, caffeine, caffeine, alcohol, all-nighters, long work days, parties, and a sleep schedule that allows for less than eight (maybe even six!) hours of sleep. What is considered a normal lifestyle for the everyday student would easily put me in a coma for a week, riddled with pain and discomfort.
Living with chronic illness is not easy. As the name suggests, our issues just happen. And the best thing that we can do about our symptoms is to monitor what is causing our symptoms to be worse. For me, this means watching what I put into my body, watching how hard I push myself physically, and watching my sleep schedule to make sure I’m not sleeping too much or too little. Failure to be mindful of these factors results in very poor health days where I cannot function. I cannot even get out of bed. It’s mind-boggling to think this is what my life is like now.
At the age of 10, my chronic condition began to develop. It was like a thorn in my side, but caused no real functional disorder. Age 13 introduced disassociation and food triggers. I was still completely able to hide my condition with tiny lifestyle changes and shake away any concern with “just teen girl problems”. At 16-19, my condition developed further, slowly altering my entire life. It is shocking to look back at what my life used to look like. It’s saddening to know I cannot enjoy the little things in life anymore, mostly chocolate, coffee, and hot seasonal drinks.
But outwardly, I’m incredibly healthy. I limit sugar, caffeine, and junk food. I drink exclusively water, herbal teas, and real juice. I eat an incredibly healthy diet. All these things are considered to be a student’s luxury, but to me they’re a necessity. My lifestyle is a reflection of my poor health NOT good health.
Being healthy does not look like vegetables and exercise (though it can help). While I look the same as I did before my health declined, my functions are different. To me, being healthy would look like my current lifestyle with coffee and chocolate, and without painful consequence. It would look like me being able to travel anywhere in the world without anxiety. This may not be the picture of health you have in mind for yourself.
Health is different to everybody and it is important to focus on yourself rather than anything else. The bitter-sweetness of the disabled community is that anyone at any point in life may become a part of it. We’ve all more or less been in that position. Being disabled does not mean you won’t have a healthy life, it just might change a bit. And talking about it always makes you feel less alone.