The more I talk to fellow "lymies", the more I am convinced that there is nothing, no other disease in existence, that causes such a myriad of what we refer to as "Science Fiction type" symptoms and such hellish suffering. While it may hold true that there are many diseases that cause human suffering, few are so all encompassing as Lyme.
First, there is the physical suffering, which has so many components to it and can range so drastically even in a single patient, from day to day, and even hour to hour. I can walk into an appointment limping on my right leg and walk out limping on the left. My brain symptoms can be flaring in the morning and by noon, I can be experiencing an entirely different set of symptoms. What's worse is that most are so stealth, that health practitioners cannot find evidence of these devastating symptoms. I cannot tell you how often I am told "But, you LOOK fine, or you SOUND great"! No scars, no bandages....relentless pain, weird brain sensations, visual disturbances, vertigo, nausea, panic attacks, blackouts, memory loss and countless other symptoms, all invisible to even those living under the same roof.
Then comes the social suffering. The kind of suffering that most people with debilitating disease are not familiar with. Normally, when one is diagnosed with a disabling or chronic disease, it is usually accompanied by a certain empathy and as a result, support, understanding and acknowledgment almost always follows. Certainly loved ones do not turn their backs on those with cancer, heart disease, diabetes...but I hear more and more people with Tick Borne Illness whose suffering goes almost unacknowledged by family members, close friends and significant others. I have but one friendship remaining that I had had before I got sick; the rest of my aquaintances have all been made after, or because of, the fact. I can honestly say I find more love and support from a first time email coming from a stranger with Lyme than from those who have known me my entire life. Why do I need to feel "ashamed" of my disease; I did nothing wrong. But I am treated no different than those who first exposed AIDS and HIV. Haven't we learned from that whole experience?
Lyme reminds me of leprosy. Many refer to it as a "family secret" or "silent suffering". They find they are embarrassed simply because it is still not considered a "credible" disease, despite the growing number of those afflicted and the studies that support it. Why anyone should feel the extra burden of shame on top of physical suffering is beyond me, yet I share that burden with so many others.
After being told by our doctors, the very people who we were brought up to believe to entrust with our very lives, that we are crazy, there is nothing wrong with us and thus label us as "hypochondriacs", we begin to keep our problems more to ourselves. Whether out of fear of ridicule or due to being judged by our own loved ones, we learn it is better to just shut up and put up.
We draw our curtains, and lie in bed in tears, and suffer quietly, and become more and more reclusive. We lie and put on the facade that all is well when really we want to shout out for help every time we are confronted. We have seen the "eye roll" too many times, been ignored too often, our tears have gone unnoticed enough. It becomes much easier to say "I'm fine" than to tell someone you have thirty some-odd symptoms you are suffering from at the moment. So, friends are lost along with all ties to our former lives.
The loss we experience is much more than just the vitality and health we once knew. Because of our inability to function at a normal level, we lose our jobs, our money, security, work related social life, then goes our homes, ability to care for ourselves, then our self-esteem and so on. And our loved ones, without understanding lose so much as well. So stealth is this disease; my son was only14 when I got so sick. MY Lyme Disease took HIS childhood away even while we were looking.
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