“What you’re going through is normal. Especially for a young cancer survivor. I think this is just the life you have to live, after cancer. At least nothing is wrong-wrong, right?”
This quote from one of my doctors is everything that is wrong with western medicine. Now before anyone who cares about me freaks out – don’t worry - I am still cancer-free.
But, I am not healthy either. For the last two months, I have been struggling with my health – debilitating attacks of abdominal pain, inability to eat food with fibre or fats, extreme fatigue, weight loss, the works.
Since January 4, I have been to the ER, had CT scans, an MRI, two ultrasounds, four rounds of bloodwork, a colonoscopy, a gastroscope, seen a rheumatologist, neurologist, dietician, two oncologists, and no test or doctor can find the reason that I am experiencing these issues.
For them - they are just happy it’s not cancer. And think I should be too. This is the answer a doctor seems to give when they have reached the end of their knowledge and experience.
But what I am then left with is daily anxiety of what I can eat, fear of going to sleep because that’s when the flareups seem to happen, exhaustion due to decreased nutrient intake, avoiding eating in public because I don’t know what’s in the food, and wondering where I go from here.
The western medical world has basically discharged me with pain meds as the solution.
On top of these experiences, my white blood cell count is so low I am considered autoimmune, but “that’s just a side effect of cancer treatment” to Western medicine professionals. My TSH levels are through the roof, a clear indication of hypothyroidism or Hashimoto’s - but that is just a wait-and-see game. All my hormones are whacked because I’m in a medically induced menopause but “that’s just a side effect of cancer treatment.”
I’m calling bullshit. The number of things that we as humans are expected to just live with just because we’re not actively dying continues to be astonishing to me. I have pages and pages journaled about my experience with cancer, and I wrote about the big ones in my book. I felt compelled to share the misgivings of “free healthcare” for a while, but then I wanted to just forget my experience with cancer. With this most recent event though, I feel once again that I am being asked to share my experiences with others – not for pity, but to let people know that no one cares about your health more than you do. You have to exhaustingly advocate for everything you want or think you need in this medical system, and when you hit a wall – turn around and take another path.
This isn’t a ranty rant hating on individual medical professionals, I absolutely ADORE all of the doctors I have seen over the last two years, and especially the last two months. But a doctor is not the end-all and be-all. Western medicine is emergency medicine. If I am in a car accident - there is nobody I want at my bedside besides an emergency medical surgeon. But they do not have the tools, nor the time, or experience to diagnose preventative medicine. But that is where the root of all disease starts, long before a western medical doctor can treat us.
Also, my first-hand experience of the way the specialties are set up leads to a lack of whole-human treatment. A general practitioner is just that. They have to know a little bit about a lot of different things. And when they don’t know more about something, they need to refer out to a specialist. But who is a specialist, they specialize in just one thing. And if the thing you have isn’t the thing they know about, you get slingshot back to your GP who will send you to another specialist, and the vicious cycle continues.
What ends up happening is your treatment and diagnosis are done by a bunch of silos of physicians looking at only one part of your body at a time, often over months and months as your symptoms ebb and flow. The problem with this approach is something I’ve learned about horse health. It’s that every single thing in the body is interconnected - and in order to get healthy we have to be specialists about human health overall, and seemingly - the only person who can do that - is you.
You need to track your symptoms do your own research and find other specialties - whether it’s someone in functional medicine, eastern medicine, a naturopath or become a Google Doctor. For all the medical professionals out there who say they hate people Google doctoring themselves (or their horses) – let me say this. I have figured out more about what is going on with my body than any of the six specialists combined that I’ve seen the last two months have been able to do.
So yeah - unapologetically be your own google doctor, and I’m not saying to be an asshole or expect more of your physicians, they know what they have been taught and experienced – and none of them have seen it all. You have to be your own advocate and you have to never stop searching until you are living the life and health that you believe you deserve.
It’s not that I’m angry at western medicine, but throughout my experience with cancer and now “whatever this is that has not yet been named” that is plaguing me - it’s that I understand doctors as individuals have limitations. The problem comes when they sometimes don’t see their limitations and when they can’t find something to diagnose you with they just say that you’re fine take this pill, or it’s something you’ll just have to live with; when the truth of the matter is, it’s something you live with until it becomes bad enough that they can see it on one of their scans and give you a diagnostic. By then – complete recovery usually is too late.
I have asked for tests they refuse to give me. I have asked them to investigate things that they don’t think I have. Then they tell me this is just life after cancer? No thanks. So I go elsewhere.
For my immunocompromised state - I’ve been receiving IV drips for my low lymphocyte and leukocyte counts with my naturopath. I found a new family doctor who specializes in women's reproductive health. I have a second naturopath opinion. I go to therapy to process trauma, get regular massage, acupuncture, reiki, and I’ve even seen a medical intuitive (who knew more about what was going on with me from reading my name alone than anyone else has been able to share).
I am absolutely NOT anti-western medicine either. I just believe in seeking until I have an answer. I have an appointment booked at the Mayo Clinic in April if I can’t turn things around by then. All of these complementary health care solutions are and will continue to cost me thousands of dollars – but health doesn’t have a price tag for me.
Before I get off of my soapbox, I really want to be clear that I am not shitting or coming down on any of these doctors. But no one gets to tell you that you feel good enough. So when my doctor called last night, elated that nothing was"wrong” with any of my scans, he was surprised by the disappointment in my voice. He’s said “but this is great news there’s nothing major wrong!” and I said “ yeah, but I’m not right.”
He then proceeded to give me a very convincing sermon about how I should maybe be OK with not feeling OK, due to the fact that whatever is causing my symptoms isn’t cancer or colitis. I went to bed and at the time was very grateful for his advice and allowed myself to think “well maybe this is just what it is, and I live day-to-day, and some days will be good and others will be bad.” I thought maybe that’s just how the rest of my life will be, and that I should feel lucky to be alive.
Then, I woke up this morning saying fuck that all the way to hell and back, and that I am not going to stop searching for an answer, or a restorative treatment that will bring my health back until I have one.
Now, no medicine, eastern or western can fix everything but combined, they can fix a lot. A huge, no actually, the biggest piece of it - involves your own mindset and dedication to being your body’s advocate. If you don’t believe you can be well, and if you listen to the doctor who says how you are is just how it will be, you’ll stay sick. Advocating for yourself is exhausting, challenging, and frustrating. It’s hard. But, let me tell you first hand - being sick is harder.
So with that, end rant. I acknowledge to the Universe that I am meant to share more of my health journey, in hopes to inspire someone struggling to achieve optimum health and take charge of their own life. I am literally an open book (shameless self-plug: grab my memoir on Amazon) – but am also happy to speak with anyone who needs some direction or guidance on how to start this process of self-advocacy. In case your doctor hasn't told you - this life and your health are worth it!