Updated: Oct 5, 2020
Welcome to Life with Chronic Illness.
We live in a society where if an animal has endured suffering, the masses come running; yet when a human falls ill and endures suffering, often they’re told to just be stronger? Why? One reason could be that we are conditioned from a very young age to push through whatever life throws us; at least I was. But what if the obstacles can’t be moved? What if the obstacles, many of which cause daily, unfathomable pain, never really go away? Welcome to life with chronic illness.
Before illness took over my life, I was living the dream. I was a career woman on top of my field, checking off the boxes society puts forth. Nothing could stop me, or so I thought. As my disability progressed, my limitations grew more and more, and eventually, my career and life as I knew it was completely gone. I went doctor after doctor thinking there has to be a way to help me, to fix me, but unfortunately, there were no fixes and little help. I am in fact permanently disabled.
Being chronically ill is a full-time job, except without the pay and no off time. Each and every second of the day my life is consumed with pain and taking care of myself, to the best of my ability. For many daily tasks, I need assistance and I often have to wait till someone is home to do certain things, for instance, like safely shower.
There is no paycheck. There is no time off. This is my life. Health is a crown only the sick can see and the healthy wear. When I stopped working someone I knew said, "I wish I could stay home all day, too." And yet I would give anything to just be healthy and at work. It's not like we are home watching our favorite tv show, living our best life. We are at home, fighting for our life.
Chronic illness is an extremely expensive "lifestyle" that none of us signed up for. I always tell my husband if we were millionaires I would have way less pain. We could afford any doctor, treatment, or medication I would need and I am positive to reduce my pain levels. Pain relief and quality of life for the ill should not revolve around finances! Besides daily living expenses, those who are chronically ill also have to pay for medicine, doctor visits, insurance, treatments, mobility aids, the list can go on and on.
The harsh reality is many times we need to choose between food and medication, between lights and a doctor's visit. To be chronically ill, in horrid amounts of pain, and cutting pills in half or scraping resin for some pain relief just to be able to afford food as well, is absolutely not okay, and yet the masses are silent and this is happening to people everywhere.
As a medical refugee, I primarily rely on cannabis for my pain relief. After moving 1,800 miles for access I thought this was going to be my golden ticket. But unfortunately, the reality is most of the time we can not afford the amount my body needs to really thrive, so each day I get my pain to about an 8 and that's that. It feels like a sick game of mental torture knowing that I could have more relief, whether it be from more cannabis, dry needling appointments, physical therapy, medications, you name it!
However the devastating reality is relief comes down to money, and when you are in pain and can not work the cycle starts to swallow you alive, fighting for more relief, the relief every person in pain deserves.
Disability is an option for those who are disabled and have enough work credits to apply for financial assistance. To come to terms with the fact you will not get better and will not work again is a mountain all on its own.
"To come to terms with the fact you will not get better and will not work again is a mountain all on its own."
It took me two years to file for disability myself; to admit that I am permanently disabled. As I am starting up this mountain, I am learning that it is not as easy as saying my diagnosis. I have to constantly prove my disability to nurses and doctors that I may never meet through the disability insurance process. I’ve had to explain why I can't just sell our car for the money, because how or why would one have an asset if you're disabled?
When someone ends up in the cycle that is applying for disability insurance, they have to explain what they do each second of the day, just to prove that they can not work. Because you know I left my career, stay in bed most of the day, use food pantries, and struggle to get any medicine for pain control, for what, fun? It’s frustrating having to prove over and over to others how sick you are when inside the battle is so overwhelming and each day you struggle to make it through. And yet this is something that chronically ill people must do. We don’t have a choice. We have to face mountain after mountain, explain why we can't just push through like society has conditioned us to believe, and in a way, accept our own defeat.
"All while trying to still maintain a smile, and keep our heads above water."
Right now there is no disability justice. Only disability in(justice). There is no affordable access to care and the medicine we deserve and need. When someone’s body is fighting itself every day, why must we make them fight even more? We need to stand up as a whole and say it is not okay that people are unnecessarily suffering. For the ones who can not afford medicine, doctors, and food. Who has to make choices day in and day out as to how much pain they should have to endure at that moment. Because I'll tell you, the answer should be no one should have to endure pain if there is an option to help them.
Medications and treatments need to be accessible to those who are ill. It should not be about how much money one has. Healthcare needs to be about the patient again. Every single person should have access to medicinal cannabis, holistic care, western medicine, whatever it takes to help them live there best quality of life. No one should have to suffer when there are options for relief. Something has to change.
So again I will ask if animals should not suffer, why should people with chronic illness?
Have an answer for Sarah? Connect with her on Instagram or search @RisingZebra on social channels.
**Originally published on April 25th, 2019 on, Cannabis for Breakfast.
Suffering from a chronic illness yourself?
Visit PBS's chronic-health resources called, "Who Cares". There's also the Chronic Illness Coalition (CIC) by the National Organization for Rare Disorders with ample programming and resources for both patients and caregivers.