If you have a chronic illness, do you remember the moment you were diagnosed?
I remember the first diagnosis I received. How mixed my emotions were. How strange it felt to finally have an answer after a grueling year of tests and many years prior filled with strange symptoms. Only to find out several years later that I had, in fact, been misdiagnosed. Instead of MS, I had Lyme disease, and a late stage at that.
I wanted to give space to a few other bloggers to share their own experiences here on the blog. To talk about what they remember of that moment a doctor found the answer they’d been searching for. And how their life has changed since.
Each of these stories you’re about to read are so important. They are a reminder of our humanity in illness. The reality of being a patient searching for clarity amidst the madness of our unique illnesses.
I hope their stories resonate with you as much as they resonated with me. Their courage in sharing is oh so beautiful and I’m honored to have them here. Thank you Kate, Shelley and Alisha for being a voice for so many others. <3
As I sat waiting for the doctor to come in, I realized I was tired of feeling vulnerable. I was weary of placing my life in doctors’ hands and having them let me down again and again. I was done listening to doctors who thought I was crazy because I knew there was something wrong with my body. After two years of looking for answers in all the wrong places I didn’t even care what the diagnosis was, I just wanted answers.
When the moment finally came I wasn’t fully prepared for the answer. I could hardly believe that after all this time the strange symptoms I’d been living with for so long added up to something, and it was something real. I wasn’t crazy, depressed, or lazy, I was sick. All my symptoms added up to a real diagnosis and now I could get my life back.
It wasn’t until two years later that I realized I was never going to get better. It took me so long to find a diagnosis that my body had been permanently affected. This was my new life with chronic illness and I had to learn to accept that my life was going to be different. Acceptance didn’t come right away. There was a lot of grief I had to process first, but eventually I was able to find peace with the messy version of myself that was created by illness.
Because even messy and broken, I’m still me.
I’ll never forget the day I was diagnosed with fibromyalgia. I was flooded by emotions. Finally, there was a name to what I’d been suffering my whole life. There was validation.
I recalled the countless times I’d squared up to guilt after being asked what was wrong by family and co workers when I couldn’t go to work or social events. I felt absurd rattling off the myriad of symptoms I exhibited, and felt exasperated every time good meaning people offered the same advice – ‘you need to exercise’, ‘you need vitamins,’ ‘maybe it’s a mental thing,’ – I was living that hell and no one understood. Nothing helped.
Then uncertainty and fear. Now I knew what to call the monster but I wasn’t sure exactly how to fight it. The doctor gave me a little brochure but said there was little information on it. My Google searches offered little results, and no one I knew had ever heard of it.
I started off very dismayed; for years, I spent most of my days in bed, never went out, because I was in so much pain, so exhausted and dizzied. I fought the best I could but felt like I was a spinning top in mud.
A lot has changed since then. A series of events, including finding a full time job forced me to push harder against the gale storms. I changed my diet, lifestyle and outlook, took time to understand my triggers, find the right medication and detox from the things/people that made me flare. It’s been a tumultuous journey but it led to me reclaiming my life, and discovering what I’m really made of.
Really?! All these crazy things my body was doing; from breathing difficulties, to forgetting how to add up numbers, body pain, to extreme fatigue and nausea…”maybe I was imagining it“?! I left that doctor’s appointment with tears running down my face.
By the time I got home I was fuming. I threw on my running gear. “If this is psychological”, I chanted in my head, “I will go for a huge run and outrun it.” At a steady pace I started off, pushing harder and harder. I was used to running 10 kilometres. This should be easy. 300 metres later I lay collapsed on the bench at the side of the oval. My chest ready to explode. My body in agony. There was definitely nothing psychological about this.
Weeks later, I walked into an appointment with a new doctor my friend had recommended. Was I game to trust a medical professional again? My list of symptoms and inconclusive tests clutched tightly in my hands. She listened patiently and asked the right questions. She even did a psychological screen to prove to me it was not in my head. She ordered more tests. Yet, then and there she suggested I probably had ME/CFS.
Two weeks and I returned to her office. The tests were clear. I met all the criteria. I had ME/CFS. I left the office that afternoon in disbelief. I had a diagnosis. Yet, I promptly turned around and played sport that evening. Life had no time to stop for this diagnosis. It took me years to truly accept my diagnosis and to admit that I was sick. I continued working, exercising, and being busy. Until one day my body had enough and wouldn’t do anymore!
My body continues to do weird and (not so) wonderful things. However, I am thankful I now have a doctor walking that journey alongside me. Who when I lose my faith, continues to push me forward, opens up new treatment options, and supports me in navigating the welfare and insurance systems. Four years in I can see how God is walking every step alongside me, and how there is nothing psychological about this disease!
Do you remember the moment you were diagnosed? Or are you waiting to find the answer to your own medical mystery?