Yes, I’ve been a Crohnie for a while now and I actively stay away from support groups; here’s why…
I recently signed up to a number of online groups that work towards helping those with Crohn’s & Colitis conditions, to be honest I had no idea what to expect but figured its better than living in my own shell. This curiosity to even seek out such groups stemmed from being surrounded by doctors who have taken over half a year to subside my flare up and have still not gotten anywhere close.
Doctors are only helpful when you’re already 80% dead
Don’t get me wrong, I think doctors are tremendously essential for our times however, unless you have something that’s fairly textbook they do not really know how to manage you, especially if you have a chronically debilitating illness that requires lifestyle management instead of treating the symptoms repeatedly with the same things.
One would think the scientific mind would wander into intriguing places when posed with a persistent problem.
Having given up on my medical team, I ventured into creating my own ‘The Human Experiment’. I figured what do I have to lose? I’ve been ill for the better part of a year AND spent Christmas in the hospital!
While exploring my options I remained hopeful in coming across some intelligent group out there with a similar perspective! And I found out there are largely two kinds of groups:
Charities fundraising for Crohn’s medical research and
Support networks willing to listen to all your woes
As well & good both these endeavours are, both these groups have something in common: they are both actively ensuring you remain a passive recipient.
What does that even mean???
Sure, we’re going to raise a lot of money and HOPE that research will give us a cure or sure, pour your heart out and we are here to listen to you whilst providing you with no actionable goals. Of course, there are the dietary tips & food hacks thrown in the midst of it all which are rather helpful (depends on what state you’re in) but NONE OF THEM ARE LAUNCHING YOU INTO GOOD HEALTH NOW!!
I love the hospital, mostly because they’re able to accurately diagnose me with exactly what’s wrong with me however, to ensure that I live my whole to the best of my abilities is really not a concern medical professionals share in abundance. And I have no desire to join a myriad of groups that exist out there and are ready to tell me that “it's okay” and “everything will be alright” because I know for a fact that the only way things are not going to be alright is when we say everything will be alright and sit on our arses.
So I took ALL (and yes, there were a lot of them) the diagnosis and reports from all my tests and began my own work.
THE HUMAN EXPERIMENT
I like to call this the “human experiment” simply because I think mainstream medical research is aided towards eradicating a cure with almost an illusory belief that once something is eradicated almost magically you are also cured from everything else you’ve been through and you return back to how you were before — PFFFOOOF! Wouldn’t that be nice?
This is my experiment on not just treating Crohn’s but also living a lifestyle that best suits me — do we really know why its so difficult to find a cure for Crohn’s? Well for starters its a part of autoimmune diseases which also consists of Lyme Disease, Rhuematoid Arthritis etc. and those are just the common ones. There are over 100 known and 40 suspected autoimmune illnesses on the horizon and why are they so vague? Autoimmune directly relates to *YOUR* immune system therefore you need a treatment plan catered to exactly what’s triggering it off FOR YOU. Ever wondered why no two Crohnies can handle the same diet?! Popular medicine until now has served us well in creating mass-treatment plans, one pill that works for everyone, clearly this requires a paradigmatic shift in thinking before implementing the findings.
So the best thing one can do when living with an autoimmune condition is to respond to your biology and that’s what I’m going to be doing here and that’s why I refuse to be part of any support groups that tell me everything will be okay as long as I have a channel to express my sufferings while not take any actionable steps in fighting for the lifestyle that I want.
And that is called FIGHTING, not sat behind a computer screen and lending a virtual shoulder for someone to invisible lean on whilst keeping them from moving forwards.
If you like this article and would like to share your own story, please do get in touch via Chronically Driven.