“Hmm. My story. One that I’ve written many times yet I never seem to know where to begin. Should I reveal the ending at the beginning? What if there really is no ending? Because really, there is no ending when it comes to chronic illness.
The thing with chronic illness is there isn’t really a moment you are given a diagnosis, your jaw drops, and your world is suddenly not the same. Instead it’s months and months of symptoms dragging you down, and investigations into what is causing them. Sometimes it’s doctors calling you depressed when tests they run come back normal, but you know your body, and you know that something is wrong.
For me, it was, and has been 6 years of confusing symptoms and diagnoses that don’t go together.
Type 1 Diabetes: This predates what I call ‘my chronic illness story’. I was 12 when I was diagnosed with this autoimmune disease, where the immune system mistakenly attacks the beta cells in your pancreas to stop producing insulin. Important note: everyone needs insulin to live!
Hashimoto’s Thyroiditis: I felt that a constant fatigue had washed over me. My doctor didn’t know if my wonky thyroid levels were the cause of this, so she said, “Let’s start you on thyroid meds and see.” Spoiler: they didn’t do the trick.
Endometriosis: The fatigue was just never-ending. No amount of sleep could fix it. It stripped me so quickly of all that I was. I also had a constant dull pain in my pelvis, that radiated to my back and left me glued to a heating pad. Given my symptoms, I was referred to an Endometriosis specialist who decided to do a diagnostic laparoscopy on me. This is where she goes in through a minimally invasive surgery and tries to see if she can find the source of the pain. I woke up from the surgery in the recovery room and waited for her to come see me. Nervously, I listened as she told me she found endometrial tissue outside of my uterus, that she removed it, and that I had Endometriosis. Finally, an answer for something.
Neurogenic Bladder: I will never forget the night that no matter how hard I tried, I couldn’t pee. Not knowing what to do, we went to the ER where a male doctor told me that “Some women think they haven’t peed when they really have peed a bit.” I knew that wasn’t my case but he wouldn’t listen. I was shockingly instructed to go home and drink 4 large glasses of water and to come back in the morning if I still couldn’t pee. Waking up in agony, we headed back to the hospital, where I had to be catheterized for what I didn’t know would be the first of many. I will never forget the helplessness I felt being attached to a bag of my own urine and not understanding what was happening to me. After finally seeing a urologist and having testing done, we learned that I had Bladder Sphincter Dyssynergia, a form of neurogenic bladder. My sphincters were uncoordinated due to nerve damage, essentially. From there I was taught to self-catheterize at home, and I still do to this day.
Intestinal Dysmotility: I’ve had stomach pain for as long as I can remember. Actually, I was shocked to find out it wasn’t normal to have pain every time you had to go to the bathroom at the age of 20. I had colonoscopies, stool tests, and blood work done that all came back normal. Until I had a Sitz Marker study. This is a test where you swallow a pill filled with 24 metallic rings. You have an x-ray taken on the 1st day, and the 5th day. On the 5th day, there should be no more than 6 markers left in your colon. All of my markers were left. So basically, my intestines are slow and sluggish. Possibly also due to nerve damage. We don’t completely understand why yet.
Postural Orthostatic Tachycardia Syndrome: I began feeling really unwell every time I was up and walking. A lightheadedness would catch me by surprise and I would feel intense nausea. I had to sit down for a while to make it stop. When I was diagnosed with what they call POTS, a lot of that made sense. My heart rate would shoot up when I stood. Basically, my body wasn’t a fan of gravity.
Neuromuscular Disease: This has been my most longstanding issue and most confusing. About a year ago, I was given a working diagnosis of Stiff Person Syndrome. I have trouble walking and definitely look funny when I walk. Enough so that people stare. Stiff Person Syndrome surely seemed to fit. My odd gait. My stiff neck and back. The muscle twitches. And most recently, spasms and convulsions that have left us feeling helpless, yet again. My doctor no longer thinks I have Stiff Person Syndrome, and I am being tested for Mitochondrial Disease, having just had a muscle biopsy. I have no memory of my last episodes of convulsions. I get teary-eyed when afterwards my mom shows me videos she took for my doctors of what happened. There have been few things more upsetting than watching my body trash and contort, as spit is frothing from my mouth, and my parents are panicking.
But through this, I have found a community. I turned to Instagram and made friends with people from all around the world living with multiple chronic illnesses that have left them unable to work or attend school. They understand what it’s like having your life as you knew it ripped away from you. We’re all fighting different battles, but at some level we just get each other.
Most importantly, it has given me purpose. Purpose to spread awareness for all these invisible illnesses that so many have never heard of. Purpose to try to make a difference in the world for people like us. Purpose to try to help others understand what living with a chronic illness is like. Not for pity. But for understanding.
Invisible illnesses can ravage someone’s body. It can happen to anyone, and the life you knew slowly disappears. So, it’s important to be aware. To be aware that the person sitting next to you who looks perfectly healthy might be fighting a secret battle. To be aware that these illnesses exist, and they often aren’t something you can see.
And if you are the one fighting a chronic illness, I want you to know that I am proud of you. I am proud of you for waking up every day and fighting the same illnesses that left you so tired the night before. No, you didn’t choose to get sick. Who would? You don’t have to be an inspiration, and you don’t have to be brave. But either way, I am proud. Because none of this is easy, and you’re still here to fight another day. Every day might not be a good day. Some will seem impossible to get through, whether it’s the awful symptoms, the side effects, the isolation, or just the mental anguish that comes with being stuck in a body that you want a refund for. But together we are so much stronger. We will lift each other when one of us falls. We will keep each other company on those nights that our symptoms are keeping us up. We will celebrate all the victories, big or small. From far and wide, and all across the globe with a unique bond, we will love each other through it.
I’ll end this with a quote I love; ‘Sometimes our lives have to be completely shaken up, changed, and rearranged to relocate us to the place we’re meant to be.'”
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