With chronic fatigue comes chronic excuses. I am talking about myself.
I’ve had lupus, or at least the diagnosis of it, since I was 15. Almost ten years now. Every day has been a battle of getting up, throwing up, and resisting exhaustion. In the beginning, most days I could barely function. I missed countless school days and work days after I graduated.
Lupus was poorly understood at the time, which made it even harder for people and doctors to take seriously. I would be told I would have certain symptoms, and when I did, confused or undereducated doctors would say I shouldn’t. Then at the next appointment I would be told I should have them. That back and forth fed anxiety I already carried from years of bullying and abuse.
Friends didn’t understand why I couldn’t stay out late anymore at sixteen, seventeen, eighteen. They questioned why I wasn’t in school. I questioned it too. It was still fresh in my memory what it felt like to be healthy, yet my body could no longer keep up with teenage foolishness. It was a dark time. I didn’t understand what was happening, didn’t have the energy to understand it, and was constantly caught between doctors who didn’t know what lupus was, those who didn’t care, and those who outright belittled me.
My choice in boyfriends didn’t help my self-esteem either. Their dark thoughts and warped ideals dragged me down. I felt cornered, stuck, and useless. That version of me never imagined this kind of life. I had always believed I could fight any battle and win. I had creative energy. I had momentum. Even when life pushed back, I thought I would always push harder. Of course, life humbles optimism.
By thirteen, I was already working on securing my future through YouTube and creative projects. So when the fatigue came, it disrupted everything I knew about my body and my identity. Playing hockey your entire life and suddenly being unable to show up to one practice, then two, then three, then all of them changes you. It affected my teammates, sure, but they did not understand what I was dealing with. They resented my absence. I resented myself.
After almost ten years, with the last five in a healthier environment, I have slowly learned how to move forward. Not that I can ever fully escape it. Lupus is forever unless a cure arrives, which I likely will not see. Please do not give me unsolicited advice. I have seven specialists. None of them have found answers beyond increasing medication, even when that worsens migraines, fatigue, and nausea. They do not seem to care. If lupus were truly understood, patients would be taken far more seriously. Being part of multiple lupus support groups has shown me that this struggle is widespread.
There is a doctor with lupus herself who found remission through a vegan diet. Many alternative approaches focus on diet and lifestyle, which I work on every day. That is why I am slowly healing. But remission is not being cured. It means living a mostly normal life while knowing symptoms can return the moment you stop following a strict routine.
Which brings me back to my original point. With chronic fatigue and chronic illness come chronic excuses.
Mine is that I always wanted to live fully. To become a recognized artist in filmmaking, art, and writing. My cousin once told me I was crazy for calling my illness an excuse for not living. But that is not what I mean.
Everyone lives with pain, some chronic, some constant, some invisible. When you are forced to live with it, most people stop there. They accept it as their life and do nothing beyond surviving. But life is not meant to be endured on autopilot. Things can be done, even if you have not found the solution yet.
Life is a puzzle, and it does not wait for anyone to solve it.
Step by step, if you are able, you push through. Sometimes you already know what needs to be done. Most of the time, you do not. You have to search. And yes, sometimes you truly cannot move forward because of circumstances outside your control, the place you were born, or a disability that is irreversible. That part is not your fault.
But the focus must remain on what can be done. Sometimes that means asking for help. Sometimes it means rethinking everything you were taught about how life is supposed to look. Society has built fake rules for fake standards, and you do not owe your existence to any of them.
If you read this far, congratulations. You probably care about yourself the way I am learning to care about myself, about my body and the environment around it.
I am sorry that life is hard. But I am not sorry if you believe there is no solution. People fight wars and still reach out for help. If you are fighting your own war and refusing to seek help, there is your first answer.
Help yourself.
The world needs change. And yes, now I sound like a motivational speaker. But do we really need to live in a society that divides us as if we do not come from the same place? No.
Make the changes.
You’ve got this.
