What They Say…

I recently watched an episode of Dr. Phil which conjured up for me so many memories and emotions that I felt compelled to write a piece about it. 

When I began watching I was thrown into the story of a woman who had been diagnosed with Autoimmune diseases as well as other mental health issues. I hadn’t seen the entire show, as I am not a regular viewer, but I saw a woman in tears as her family (and Dr Phil) were convinced she was a hypochondriac and that this was at the root of all her issues. 

It was heart breaking.  I changed the channel. 

I was reminded of the many years and the people who had responded to my health in a negative ways and said terrible things about my health journey. It is a very painful and soul destroying reality when people that you trust and expect better care from treat you in such an apalling way. I will probably never really be able to describe it adequately in words. I prefer not to try. 

Autoimmune diseases are a group of diseases that are ‘easy prey’ for people who want to behave poorly or cause pain as they are invisible and hard to diagnose.  

Some people wait decades for diagnosis and at the earlier stages sufferers can often experience periods of remission when the diseases may not be raging and flaring, therefore it may appear non existent or cured. Or imagined. 

For many years whenever my body started to ache and experience frieghtening and debilitating symptoms my partner and some family members would be cruel and accusatory, which made me work harder to try and push through and hide my suffering as much as I could… until one day I couldn’t hide it any longer. Progression had taken over. 

Not being able to work or be a reliable giver were not tolerated by those people who were saying these things, instead of being concerned and caring, they all had their own agenda’s for saying and doing what they did. Nothing was really going to stop them, especially not me with my soft heart and emotional skin. 

I was getting labeled as a hypochondriac and an attention seeker instead of being seen as someone who was fighting hard and hiding so many symptoms from everyone around me. For many years I told no one the real hell I was going through. Afraid of more cruel words and losing my employment… and more. 

Because I hid and fought in silence for so long it only serve to delay in me getting the early treatment I needed and sadly I had progressed to a point where my life was completely turned upside down… forever. Things were now systemic. 

When I started getting diagnosis and treatments I discovered so many others like me, in online communities all over the world. All hurting. All hiding. All of whom had been told hurtful things from family and loved ones. All told they were drama queens, attention seekers, liars, malingerers, failures, mentally unstable, useless and hypochondriacs. Truly horrifying! 

I have spent many years trying to come to terms with these people’s actions and make a peace with their ignorance, their cruel words and forgiving them. It isn’t easy and I know that there is still some work to be done. But I am in a far stronger place now and have recognized what is more important in life. 

For now I try and redress this painful imbalance and injustice by doing whatever little bit I can to help the Autoimmune community build their self respect, dignity, emotional strength and try to stamp out some ignorance. 

By honestly sharing my journey and some of the physical and emotional challenges, it is my hope that it may help someone out there who may be going through something similar and let them know they are not alone and that there are many people who have been where they are and endured some of what they are going through. We  dont have to hide or feel ashamed. 

Sadly, with chronic illness and Autoimmune diseases the reality is you will  lose people along the way, but not everyone we lose is a loss, and if they are hurtful and cruel then you may not really need them in your journey and the life long struggle ahead. 

It may be more beneficial to let those people go and try and find peace and energy with people who help you find joy in life. 

What strangers think of me and people who have never met me or don’t really know me, is of little interest to me now. What matters most is how I feel about the future and those things/people who have real meaning in my life. 

People will always believe what they want about you, but it’s what you think about you that will always be more important in life, and in the chronic life that lays ahead. 

Gentle hugs, 

Trish. 

3 thoughts on “What They Say…

  1. I agree Trish, we see snapshots of people, almost never the whole picture. People think of me as an active happy carefree man of 60. I see myself as broken and pain filled. Others see me as mean, or kind. A few see me as accomplished others see me as a failure. The truth is that over my life I have been all of those things and more. The thing is I am different to others and I am not always truthful to myself.

    Yes, I could have been better, kinder, happier, a better husband and father. But no one (not even me some days) knows the full story. So little of what we are is one dimensional. I hope I can remember that when I see others.

    Liked by 1 person

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