Let me take you on an all too familiar journey that you will most definitely connect with .
In my line of work it doesn’t take long for my patients to express that their disease has taken their life away. Not in the sense many non-chronically ill people could understand, but in the way only you and a select few could understand. The picture above gives you a great representation of what many of you experience. Your illness creates seclusion and the sense of being ostracized.
Many people reading this whom have never lived with a chronic illness or have never been around chronically ill friends or family may find this a difficult concept to understand. Many of you feel the burden of illness more than just the physical pain, the eye strain the over stimulated brain the crippling fatigue or blinding headaches. Many of you look perfectly normal where no one would realize for a second that you are living with a secret. A secret you hide so well that not even your family may realize the agony you are in.
As you look outside that window and see your friends or family perform tasks you used to be able to do your mind starts to work against you. The more and more you step away from commitment and daily life because of your illness the deeper and deeper the seclusion. What I have found is this is typically within the first year of a mystery illness. Being ostracized happens later, typically in my experience around years 3-5.
How does one become ostracized? There are two factors at play here. The first factor is that some of you told a little white lie. You’ve routinely said this excuse or that excuse during the time your friends or family wanted to get together. Human nature is typically to “Save Face” but it has detrimental concurrences.
The problem with chronic illness and little white lies is that people who are not versed in Chronic Illness assume you are being anti-social or feel that you have become dis-interested in their lives. You and I know this not to be true but people are very fickle and get offended easily.
There is yet another factor. The current social outlook of chronic illness is that of non understanding. Many people who don’t live or work with chronically ill patients have a common thought. If you look fine you must be healthy. They don’t want heart to heart relationships they really only want the “fun” you. This includes family and “good’ friends.
Current medical standards and services for the Chronically ill are shockingly abysmal. If medicine can’t see it with imaging or blood they tell you the worst thing a chronically ill person could ever hear. (Your are not sick, it’s all in your head or you have a psychosomatic condition or you are faking it and looking for attention).
The above two scenarios are not the only two. There are many ways seclusion and the feeling of being ostracized can occur, these a simply in my practice the two most commonly expressed to me by my patients.
When your friends and family start to exclude you from activities, you’ve definitely reached that point where you’ve been introduced to the all too familiar human response to the chronically ill.
I’ve been blessed to work with a lot of amazing people! Most of these people were so sick they could not stand or speak. Some even had spontaneous non-medically explained seizures or moments of acute idiopathic paralysis. They all have one thing in common: Chronically Ill, Medically Diagnosed with Lyme Disease and after years of traditional unsuccessful antibiotic therapy, they were all medically diagnosed as “Psychological Cases”.
Now, to set the record straight, there are people that fit the Psychological case label, but the high majority of my patients should not be on that list. They are sick with an invisible disease that does not respond to conventional care. They are not “CRAZY”.
In my next blog I aim to bring information on why you should want to focus on retraining your brain for relief of chronic illness and its effects on your body.