You would not believe the amount of emails and messages I get everyday telling me how I need to cast off ‘western medications’ and embrace a healthy diet and ‘heal myself’.
Every day, hundreds of people who don’t know me, have never met me, have NO idea of what I have tried and what I do EVERY day, tell me how I am causing myself more harm by taking the nasty western medicines and sending myself to an early grave. Words can’t describe how much this used to hurt in the past. It still hurts my heart that ‘patient blaming’ not only happens from those in the medical profession, but also from the other side of the street, from people from whom you would like to think had a bit more empathy and kindness ie. other patients or non-medical professionals.
These people who write to me claim to be former autoimmune patients who 1. Ate something. 2. Drank something 3. Detoxed something or 4. A combination of all 3. It seems that they all have access to a miracle that only they know of and can dispense, and apparently I am digging my own grave while I take the toxic drugs that the doctors are offering me. They ‘seem’ to know me so well, but do they?
The truth of where I have been and what I have tried is very different than what they like to believe or would have others believe.
In the past 10 years, only a small portion of that time have I used heavy duty ‘western medicine’. During the past 10 years I have juiced, Gluten freed, Dairy freed, Inflammatory elimination diets, FODMAP, I have drank, I have eaten, I have been to naturopaths, I have drank green slime, I have detoxed, I have lived on liquids diets (mostly because I couldn’t keep anything else down), I have meditated (I still do actually), I have journaled and I have Googled. I have been to psychics, chiropractors, massage practitioners, acupuncture, kinesiologist, Occupational therapists, Physiotherapists, aromatherapists, guru’s and many, many more.
I have lost track of the amount of people I have consulted and seen, and the amount of things I have tried and done. There is nothing that I would not have done in my pursuit of wellness and relief, and yet here I am in a wheelchair and mostly bedridden and in pain.
So, NOT knowing me, my blood tests, my MRI scans, my Xrays, my eye tests, my ECGs and a raft of other details about me does not bode well for someone to pass judgement on me. In fact, I don’t think that these people who are such experts in my health, could even pick me in a line up; at least the western medicine doctors have at least seen me and met me; not that there aren’t poor examples of them too but at least they know a little more about me and my history.
Despite everything that I have said though, the worst part of it all is the way autoimmune fighters are having to fight the medical system, societies ignorance, powerful medications, devastating side effects, terrible pain and disability, lack of empathy AND now these people are climbing on-board to make us feel even worse about our daily battles.
While I don’t consider myself an expert in THEIR lives and in their bodies, I would appreciate the same respect. Personally I don’t think health and cures are things that can be ordered off the internet like eBay, but the internet HAS been a wonderful place for me to meet, connect and share stories and it can also be informative in many ways. Fortunately I have met far more wonderful people than negative experiences and as for people who offer me unsolicited advice and health tips, well I think a nice dose of friendship and sense of community can fix that!
Autoimmune illnesses are still not well understood, even by the medical profession and there have been many, many people who are sad, hurt, disabled, jobless, divorced, alone and isolated because of these awful facts. It is a long and painful road to get to where we need to be as a community, but I want to do my little bit to help through advocacy. There will always be ‘get better quick’ people, as there are ‘get rich quick’ schemes and ‘lose weight fast’ fads but I am more focused on what can be achieved long term, and with proven results for EVERYONE.
2 thoughts on “The Miracle Cure? – #meds #respect #advocacy #Autoimmune #chronicillness”
Thanks again, Trish, for another great post. ‘Patient blaming’ is a huge problem for those with both autoimmune and autoinflammatory conditions. As you say, people with autoimmune conditions already have enough to deal with, and have not chosen to be ill.
I really don’t understand it my friend. I can only compare it to how those with Mental Illnesses must feel isolated, blamed and humiliated. It makes our voices and our actions so important to help each other and to inform the world – sending much love your way.