The other day I was returning from an MRI and I made the very sad realization that most of the painful and sad treatment I encounter these days is from the medical profession and health care practitioners.

Let me be more clear…

when I look back and think of the times that I have had a difficult and painful encounter, since being ill, it has almost always been whilst attending a scan, a doctors appointment, a test or some such medical procedure. It seems almost completely contradictory to what we should expect to receive from our health care systems!

So many times I have left in tears or mystified by what I have encountered that it is now commonplace… and there is absolutely no consistency from any health care areas. I recall having been dismissed, ignored, prodded, pushed around, spoke down to, hurt and having my time wasted on more times than I care to mention. I am now at the point where I will do anything to avoid going to a specialist, scan or hospital! …Even endure ridiculous amounts of pain!!

Why has it become this way?

Time was that I thought the worst reactions and treatments had come from unthinking people on the street or uncaring family and friends, but they are few and far between these days as I don’t associate that much with those whose behavior I no longer deem worthy, however, when it comes to needing to attend various doctors appointments, annual scans and to carry out tests, we have no choice but to submit ourselves to the various systems and institutions that we should be able to rely on to provide us with patient care. Unfortunately though this is where we can be hurt the most and where we are the most vulnerable, because there is an expectation that they are aware that we are not well and that we need a level of appreciation for our circumstances… Often this simply works against us and only makes it far more upsetting when we are treated poorly.

After a decade of trying to navigate the health care system, see doctors, attend tests and scans, give blood, receive treatments and investigate all the issues and problems that I have encountered I can honestly say I am well and truly over it all!

But how can I be an advocate when I feel so completely helpless and exasperated by chronic care and autoimmune treatments? … That is my constant question these days.

I am painfully aware that the majority of chronic sufferers and Autoimmunes feel exactly the same. Even those that were former doctors, nurses or other such roles, they have been put through the same mill and been mistreated, neglected, left in pain and feeling abandoned. It’s just not good enough!

The worst part is when my fellow Autoimmunes have spent countless time and money to try and diagnose or identify a difficult and life changing illness only to be left undiagnosed and in limbo.

Undiagnosed equals untreated in the world of illnesses and diseases! It also means living under the cloud of suspicion and isolation and it’s simply not good enough!

Many of us can learn to live with the pain and emotional scars that being treated cruelly by a friend or family member can cause, after all it can also be quite liberating to find out who really loves and cares for us, but to have to endure feeling abandoned or even mistreated by people whom we pay good money to care for us, and treat us with respect and dignity, is completely unfathomable! They should know better and they should also be very familiar with how chronic illnesses and autoimmune diseases can behave.

If the medical profession can learn to adapt and respond to those patients in palliative care and other branches of medicine then there is absolutely no reason why they can not adopt similar caring practices for those with chronic and life changing diseases!

I don’t want to admit that I no longer regularly want to go to doctors appointment, that I avoid scans and MRIs that I linger in pain and disability, that I am consistently late in having my bloods checked and that now I simply endure something rather than have it checked or scanned. I do not encourage my readers to do this so why am I doing it?! The truth is my last MRI was excruciating, my last specialist appointment meant waiting in pain for over an hour and a half, my last steroid joint injection really didn’t give much lasting relief, the last biologics I had made me incredibly ill with the side effects and every new doctor and diagnosis is an ordeal beyond description! I just don’t want to do it anymore! And so do many of my fellow Autoimmunes… and it’s not good enough!

Perhaps the best thing I can do as an advocate is to be honest. To say it’s not good enough. To care about my fellow fighters and to keep spreading the message that we need better support and understanding from our health care systems and from the world at large.

Perhaps that’s what advocates do?!…

gentle hugs,

Trish