Back To The Dreaded List .....

Back to the dreaded list .....

For those who are fortunate enough not to know this, focusing on one's condition and then having to list and describe it in its totality is a devastating and deeply depressing job. When you have to really, and I mean really consciously face your condition, then have to share it, you often go into shock over the enormity of it all. Seeing and consciously experiencing your condition, in detail, all at once is often overwhelming and can plunge you into a deep depression and state of shock. When you have serious and often painful chronic conditions, the way you survive living with them is to shove them into the back of your mind and only pay attention to and deal with those things that are the current squeaky wheels in your daily life. To try and consciously deal with everything concerning your condition on a daily basis is more than any human can deal with before quickly becoming incapacitated by its enormous impact on both your life and psyche. This is often why those who are disabled by chronic illness find it so hard to fill out the necessary paperwork to apply for disability and other benefits. We work so hard to be our best, to make the most of our lives, that to do the opposite in-order to be recognized and validated, in-order to receive benefits, or simply to receive needed treatment, can be to much to bear.

Sometimes, though, you simply have to do it. Sometimes it is good to do it, so that you can see that you are actually doing all that you can do, and are doing it quite well, considering the true circumstances of your life. Those of us with a disability and/or chronic illness are the harshest, most demanding critics of all when it comes to ourselves. So, sometimes we have to step back  and acknowledge our lives and give ourselves some much needed pats on the back, and to forgive ourselves for being only human.

To begin with the Dreaded List, there are some things that need to be understood first:

Ehlers-Danlos Hypermobility - a Definition: For a full definition, please read this POST.

According to the medical article by Dr. Marco Castori,  titled: Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and SystemicManifestations

"Actual research progresses on JH/EDS-HT envisage an unexpected link between heritable dysfunctions of the connective tissue and a wide range of functional somatic syndromes, most of them commonly diagnosed in the office of various specialists ..."

"It is expected that, in the future, the study of heritable dysfunctions of the connective tissue will move from" the study and recognition of only Joint Hypermobility Syndrome to one that includes many other diseases and human biological areas, "as a prominent field of interest. Mostly including fibromyalgia, myofascial pain and complex regional pain syndromes. Comprising xerophthalmia, xerostomia, vaginal dryness, and abnormal sweating. Asthma, atopy, gluten sensitivity, inflammatory bowel disease, and recurrent cystitis are all possible manifestations of an underlying immune system dysregulation. Such an interpretation extends the horizons of the study of heritable anomalies of the connective tissues to a series of bridging phenotypes filling the gap between true HCTDs and (apparently isolated) functional somatic syndromes, such as fibromyalgia, chronic fatigue syndrome, and functional gastrointestinal disorder(s) ... In this context, the unveiling of JHS/EDS-HT molecular basis and the related pathophysiology could have unexpected effects in understanding and, hopefully, better treating a wide variety of common functional disorders, which actually represent a great challenge for the healthcare system of most industrial countries."

So, you can see that this is a complex, overlapping disease with many more manifestations and influences then ever before realized. Because of that nature, Nadine and I have always referred to ourselves as onions. As you peel away one disease layer, you find multiple layers underneath. All of which influence, aggravate, and often mask or behave like other already known diseases. Which also makes writing about it, and especially listing it, very difficult and often makes for a very messy and confusing document.

This is primarily why it has taken me 45 years to get here. That and being both female and poor. In the medical community of the last 60 years of my life, those two things marked you automatically as a malingerer, and possibly someone who suffers from Munchausen Syndrome OR Munchausen Syndrome by Proxy if you have an ill child, as I did. One doctor went so far as to describe in detail, in my records, why and how she thought I was a malingerer, when in fact she was accurately describing a person with regular severe Premenstrual Dysphoric Disorder (PMDD), and debilitating sciatica, from a diving accident at age 13, which was causing a prominent limp. She never saw past her own prejudice. Thank goodness I not only received copies of my records, but also had a great new doctor who read them and also pointed this fact out to me. That wonderful doctor was the first to recognize what I was going through and to begin treating those two problems. After nearly 17 years of suffering from these two problems, it was the first time any medical professional had, not only acknowledge that they were real, but was able to begin treating them. I remember staring dejectedly at the examining room floor, in a deep depression. When she acknowledge the reality of my condition, I looked up from the floor and gave her a look of renewed hope and enormous gratitude. It was a major turning point in my life, and it only took 17 years to get there .........

So, not only does directly facing this illness cause a devastating psychological effect to one's self, actually being able to make sense of it all and writing coherently about it is quite a challenge. And so it is true for me as well. So please bare with me as I crawl slowly towards the posting of our list.