November is CRPS Month

Hello Friends, from your regrettably much-more-absent-than-not fellow Beast Tamer. I've placed the much kinder "regrettably" in place of the word that originally came out; "shamefully"... because that's one of the things I'm trying hard to work on... taking a step back from the shame and guilt that is, for some of us, some of the time, so much a part of being disabled. I do regret that the challenges I am facing with my body have made it impossible for me to continue with my work on Taming the Beast in the way I would like.  And I am very distressed that I will not be able to be taking part in anywhere near the degree of CRPS Awareness initiatives that I would like to this month. But shame? No. I know that there should be no shame... for me, or for my fellow beast tamers, if our struggles are even less manageable at this or any other time... it's just another turn of the wheel, just another wave in this great big sea we're trying so hard to swim...

It is what it is... and what it is, is chronic illness. Systemic Mast Cell Disease, Ehlers Danlos, RSD/CRPS. These words that define so much of my daily life and yet mean so little to many who know me casually or tangentially, and even to some who know me fairly well, from various points in my life and who love and/or care about me, but haven't been in a position to become familiar with what those words actually mean. It is because of this common reality, and because the widespread ignorance of rare diseases causes so much misery, that awareness efforts exist; awareness efforts such as November being designated "CRPS Awareness Month".

What do I mean, that ignorance of rare diseases causes misery? Ignorance of rare diseases impacts those who suffer from them in a wide range of ways, creating a pattern of lack that makes daily survival ever more challenging, causes physical, mental, and emotional suffering, adversely effects medical care (especially in emergency or critical care situations), and even stands in the way of  advances in treatment or the hope of a cure.

1. Medical care. GPs are exactly that; general practitioners. They don't know everything, and they are trained to be the front line only; hopefully, referring to specialists when what their patient is experiencing is outside of their experience. What happens when even the specialists don't know what they are dealing with? What if you have a disease that they may have read about in their medical text books back in school and never come across since? What if your disease is so rare that there are one or two or NO specialists providing care for that disease in your city, your region, or in your entire country? How can you get decent treatment? How can you know what advances are being made, what new options for care might exist? What happens when you need emergency medical care and the staff at your local hospital know nothing about your needs, or the things that might adversely impact your survival?

And what if your disease is one that has been misunderstood, previously designated as a "mental disorder", when it has entirely physical causes... or that it cannot spread throughout the body when it invariably does... and the last information your doctors read, back in medical school, was based entirely on those old and now known to be false ideas? What if your disease is now known to be one that, over time, may impact any or every part of your body, potentially causing changes in any or every organ's function, altering  heart rate, digestion, sexuality, cognition... you could be misdiagnosed with pretty much anything under the sun... or if your doctor knew only part of the picture, important diagnoses could be missed because anything that happens to you is dismissed as "just part of _____". 

What if your disease is a disease of monstrously high level but continuous pain? If your doctors don't know what they are seeing, they may see you as exaggerating, as lying, or even as a "drug seeker" or mentally ill... and refuse you medications or treatments that you desperately need. And if you've lost your family because they don't understand your disease and you can't get your doctor to help you explain because she/he really doesn't know or perhaps even believe in your disease, even if you've been diagnosed by someone with much more training than they have? Or what if you can't even get diagnosed in the first place, because none of the medical people around you know what is wrong with you... so you suffer insanely, day after day, with no diagnosis, no treatment, no way to understand what is happening to you... All of these scenarios are happening to sufferers of CRPS around the world.. every single day.

2. Family, friends, &social support. Because the disease is rare, it is not commonly understood, perhaps virtually unheard of. This means that family, friends, employers, and others in the community will not understand the limitations, struggles, or special needs faced by those who suffer from it, even when they are told "I have CRPS (or Mast Cell Disease, or EDS, or...)". This puts the onus of education on the person who is suffering, and who may not have time, energy or resources for the task. Even more to the point, because the information is coming from the patient themselves, there is a high likelihood that what they say will be misunderstood, misinterpreted, discounted, or dismissed. People with rare diseases often lose employment, even when, with a few accommodations for special needs, they might be able to continue in their professions, at least part time.

Meanwhile, people with CRPS often fall through the cracks of social support systems. Since an actual "win" of a legal or insurance case involving CRPS must take into account the dollar value impact of a disease that often costs the sufferer their livelihood, their marriages and social networks as well as the costs of a lifetime of increasing disability, dirty fighting is the norm in a case where CRPS may be involved. So often, sufferers have no pension, no savings, and no career with which to support themselves. With diagnosis often delayed for years, or never happening at all, because of lack of awareness within the medical community, people with CRPS may be misdiagnosed with mental illness, and receive not only utterly inappropriate treatment, but suffer the terrible stigmas and lack of understanding that are part and parcel of how we treat the mentally ill in this sad world of ours.  

People with rare diseases often lose friends and social connections, because the challenges they face require understanding or accommodation that is often not forthcoming; sufferers are often ashamed of having special needs and after facing skepticism or lack of caring when they ask for help, become even less willing to risk the stress of attempting to educate others about their condition while fighting the exhaustion that comes with it. Those of us who have had the incredible luck to have access to the internet, to facebook, and to a community of fellow sufferers through these tools, have reason to thank our gods, our stars, or whatever forces guide us... 

For when the heart-breaking cycle of ignorance and lack of understanding and care includes family, patients can lose everyone... everything that matters... becoming truly and terribly isolated. Human beings are pack animals... isolation from the herd (shunning) is known to be one of the most devastating psychological punishments possible for our species. Is it any wonder that almost every rare disease carries an increased risk of suicide... and CRPS, with its monstrous burden of high level never ending pain and whole body dysfunction, the highest loss of life from suicide of all?

3. Hope for the future. CRPS has no cure. A very few sufferers go into remission... but that's the gold ring, and it is grasped by very few. Most of us have to accept that this ride is for life, and hold on the best we can. The only hope we have is through research and compilation of knowledge. Research costs money, and is usually done by companies hoping to make money with what they learn. Both of these facts doom those of us who, as the saying goes "Burn for a Cure".

As I write these words, "Burn for a Cure", I find my eyes filling with tears. Tears for all of the years of pain... my own and so many others', and in particular, tears for the loss of a brilliant poet and loving friend, fellow CRPS victim Cross Yoler, who last year flew to his death, his darling and utterly devoted dog in his arms, leaving the words "We Burn for a Cure" on his car at the top of the cliff, and a legacy of shatteringly beautiful poems and broken-hearted friends in the CRPS community. Cross Yoler died because of lack of support, from his family, his friends, his doctors, his local community... a lack of support that had its genesis in lack of awareness or understanding of the devastating disease he so bravely lived with.

Though CRPS is a rare disease, it is not so rare as once believed. Sufferers around the world can attest to this... many women (as CRPS often hits more women than men), men (especially veterans), and most cruelly, children around the world.  In some countries, most notably Holland, numbers are being tracked, and breakthroughs in understanding are happening... though understanding of the genesis and mechanisms of this brutal disease are still fractured and incomplete. It is only through research that a cure for CRPS will be found. It is only through awareness that funds will be designated for CRPS research.

Victim is a word I generally avoid... for myself and my fellow "Beast Tamers", most of us need to see ourselves in a more positive, far less final light... we work hard to see ourselves as in process... getting better, giving to our community, sharing information, taming our beasts. But the truth is, all of us have suffered, suffered and continue to suffer losses in every facet of our lives, and pain such as most of our well friends cannot even begin to comprehend... we rise to fight another day, again and again and again, but CRPS has and continues to victimize us... The victims of the brutal disease that is CRPS need to have the hope that one day, if not for us, then for those who will follow, there will be better treatments... there will be a cure.

So Please. Support awareness efforts for rare diseases. Support awareness efforts for CRPS, such as November is CRPS Awareness  Month, and the "wearing of the orange" (the "colour" of CRPS, to represent the burning neuropathic pain that is so much a part of our lives). If you have funds to give, please consider giving to CRPS research around the world, or give to the victims of this disease, through support organizations world wide. 

~ We Burn for a Cure ~




Author: Lili Wilde
Date Posted: 2015-11-03   Date Last Edited: 2015-11-03 13:36:42


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