Growing up my understanding of illness and ailments was fairly generic and on par with almost everyone else in the community. We knew there were certain illnesses that people got whereby they either recovered with some antibiotics and/ or surgery or they died.
Cancer, measles and chickenpox was the most often mentioned illnesses in my youth and combined with a rudimentary understanding of human reproduction that was the limit to our combined knowledge of medicine and all that was ever needed. This is most likely why autoimmune diseases and invisible illnesses were rarely diagnosed and why many sufferers were mostly regarded as liars or malingers.
During the many decades in which I would experience bouts of illness or relapses I would become so scared and isolated as I had no idea what was going on inside me. I often wondered if I was going mad and my self esteem would ultimately plummet.
I was discussing my experiences with a fellow autoimmune sister the other day and I said to her “…I simply can’t fathom how these diseases affect our bodies… growing up I believed that if you had a fever you had would generally have some kind of infection and a dose of antibiotics would cure you, if you had broken something it would mend and that illnesses were straight forward and generally recognizable… never could I have imagined a situation were a person could lose sight in one eye, have no balance or that they would itch without any reason! These types of symptoms seems completely outrageous and incomprehensible to me… we were never told that such things even existed…”
I see now that we are a product of societies lack of knowledge and their blind disbelief. I also believe that some people even don’t want to believe such things actually exist. Especially some misguided people who may have some other motivation for their skepticism.
During my own research I read that even as recently as the mid 1900s their were many people who were tragically committed to asylums because people did not believe their symptoms and their invisible illnesses, later it was discovered that many of these patients were suffering from what is now known as multiple sclerosis. Truly tragic.
Multiple sclerosis is indeed a very difficult illness to understand, hard to treat and, sadly, can take many years to diagnose. During that time many people will be labeled as liars, attention seekers, malingerers or hypochondriacs. It was completely staggering to me that some of the earliest symptoms I encountered was that the vision in my left eye had become blurred and I could barley make out light and darkness through it. I was beside myself with worry however I feared losing my job more than losing my sight so I hid away at home and told no one but my husband. I put a patch over my eye and simply waited and hoped.
Seems ridiculous to me now.
Thankfully my sight was returned but never the same again. It was to be only the beginning of many unexplained symptoms which took many years to identify. Thankfully my current neurologist was much more understanding of multiple sclerosis and spectrum disorders. Optic neuritis is what caused my vision to do such a thing and even today when the temperature becomes too hot or I become overheated my vision will blur and fade without exception. Tell this to any person on the street and they will simply laugh or call you insane or a liar but tell another sufferer and they will instantly nod and understand your pain intimately.
That’s what knowledge and awareness can do.
So many of the symptoms we experience make no sense to doctors and even less sense to ourselves so we will often say nothing and learn to hide a lot of what is going on. For instance my arms and back can suddenly feel like ants are crawling all over my skin. I can scratch myself until I bleed but nothing can stop the itch and irritation I feel. I have bought creams, applied lotions, consulted dermatologists, changed soaps and everything imaginable but nothing would have ever made me suspect that it was the very nerves inside my body causing this sensation. It seems unfathomable!
Often stress can exacerbate the symptoms of MS and many other autoimmune diseases as it will often trigger our adrenals and internal defense mechanisms inside our bodies which once served to protect us, however autoimmune sufferers are attacked by these mechanisms and we will start hurting ourselves, internally. Why? No one knows. Not even doctors.
Many autoimmune sufferers who know what stress can do to our bodies will often avoid stressful situations and stressful people because we know the price we will pay for such incidents. The high price that we pay. This usually means we are labeled as hermits, unsociable, rude or uncaring. However nothing could be further from the truth. We simply can not risk exposing our health to those people who would trigger pain and relapses without a second thought and to those who would probably dismiss our suffering anyway.
Again. It seems unbelievable that such illnesses could exist! Why were we never told or warned? Why has there never been any advocacy about such diseases growing up? I knew more about ancient Egyptians and Black Plague then I knew about diseases which, as it turns out, makes up the top 10% of debilitating illnesses and has over 500 million suffers world wide!
Because people don’t want to know unless it happens to them. Invisible also means ‘convenient to ignore’.
Systemic illnesses such as autoimmune diseases are completely unappreciated and doctors seem unable to comprehend how someone with RA can also have issues with their lungs and heart despite them reporting symptoms to their primary carer.
In one such example my rheumatologist did not know that my Sjogrens Syndrome could affect my pancreas and had damaged it until a GI confirmed it several years later! By then I had lost the ability to make certain enzymes in my body and now must take medications for this. I actually don’t blame my rheumatologist but it illustrates how poorly understood the systemic nature of autoimmune diseases are.
I probably understand my illnesses more than the average doctor and that is sad indeed as I have no medical Training whatsoever but I have decades of first hand knowledge and struggles. This is more information than most medical doctors have combined.
In short the sheer scale of these diseases and their insidious nature is almost beyond imagining and it astounds me that as a young person who loved driving and motorbikes could one day find herself unable to drive due to vision and balance issues that are invisible to the naked eye (Forgive the pun). This is little compensation for us as sufferers who find ourselves not only missing out on an enjoyable pastime or hobby but it is also a huge part of our identity and independence!
It is devastating.
Systemic diseases don’t just affect our physical health but they affect the emotional wellbeing and self worth of al those it affects. This is something that no one can possibly understand unless it happened to them and that is why I have learned not to put too much faith and trust I those who don’t also put a lot of faith and trust in me.