Guest Blog - written May 2, 2015
Dr. Nancy Klimas, an expert in ME, CFS, and AIDS, was quoted as saying, "A CFS patient feels the same or worse than congestive heart failure; the same or worse than late stage AIDS. If I had to choose between the two illnesses, I would rather have H.I.V. "
Not to say that it's easy having AIDS either, but CFS/ME (and Fibromyalgia) does not get the credibility for the seriousness of how deeply those afflicted suffer invisibly, or the understanding of how insanely hard and challenging it is on a daily basis with very little relief that goes on year after year into decades. And for many of those years and decades, I only lived with "it" and didn't have a name for this invisible torment that no words can describe as I was left for dead by the medical community.
I kept quiet and tricked people for too long about this and now I am finally being honest; being honest to give voice and validation to so many of us as we have hidden in shame and confusion. But now it's time to get real. Talk about it. I downplayed it for decades and used every device available (healthy and not so healthy) to cope to appear "normal" and capable to get through social situations, relationships, careers. But the wheels always fall off in each endeavor because I didn't have a clue of what was happening to me. So, I tried to positively think myself better, along with years of much trial and error in everything holistic (as the medical community has no answers or help) and blamed my supposed personality or thinking defects. There is so much oppression around these chronic toxicity illnesses (like Fibro, MCS, Lyme, CFS) that is trying to shame us into silence. No more. Time to bring awareness. Time to be courageously truthful.
Most people think that because you aren't killed quickly by "it" (your ongoing struggle that is invisible and has no name) nor appear to be ill, then you can't be that sick and are exaggerating or creating problems when there are none. But just the opposite is happening; you are hiding and diminishing the reality of the seriousness of this mystery illness. So, you aren't seen or validated (and then wrongly seen), then people demand of you things you are incapable of doing or being and add insult to injury by telling you (or silently judging you) that it's all in your head or it must be just your need for suffering and lack of gratitude for life. Just because they might see you on a good day, they assume that you are fine (that day when you could and chose/allowed to see people that you built up to for days and weeks and will pay for in the same). You use every coping mechanism to get through this social interaction available (and invisibly to those you are with, so they just see you as "fine"). All the attempts at hiding "it" and overcoming "it" due to shame for this mystery while in a social interaction has worked. You've fooled them, but gotten yourself caught in a corner as well. A lonely double life.
You want to be a part of the land of the living; you long for it and love being with people, not isolating yourself, but it devastates you energy wise. You're then accused of ignoring friends, not making efforts, preferring isolation over connection, preferring animals over people. None of these are true. You want to share with others what's happening to you, but don't want to focus on it when in a social setting, as it's relief from the isolation; what words can possibly describe this hell? Any attempt to describe it makes you sound like you are complaining or being negative or too focused on it (as if a vice on your head can be ignored even though you tried to deny it and avoid it for years). So, you live a double life that is isolating, lonely, suffocating, and tormenting; you're never truly seen for your genuine self in any way. When with people, you then make the choice to hide it and cope with all your might with whatever resources are available before collapsing behind closed doors again. It's living in a glass cage and window shopping at life despite the utter urge to live in the world and be alive in all ways in all emotions, not just pain.
Once you do reveal all this and are honest in attempts to be authentic, real, truthful for a deep connection, most people eventually leave and drop like flies from your life, as they can only take so much before moving on with their own lives (I'd high tail it away from this too if I could, but you can't). You become a never ending saga and people think you just need to snap out of it. Which leads you to isolating yourself again and hiding it again, but there's no escape for you. You have to be with it. It's something that has to be faced day in and day out relentlessly. The divorce rate for CFS sufferers is 75%+ and suicide is one of the top causes of death of CFS. That's why more people with this need to stop hiding and be honest to get the validation (and research/help) they deserve, as these toxicity chronic illnesses are highly complex.
Many bodily systems are seriously effected; immune, endocrine, nervous, cardio, mitochondria, methylation with a wide range of symptoms to sensory overwhelm hell (too loud, bright, tight/loose clothing - tactile, chemicals/smells sensitivities) to fatigue that feels like a hangover, poisoning, the flu (without the sneezing and fever), while heavy lead fills your cells all in one go each day, to varying degrees of body-wide chronic pain, to chronic headaches, dizziness, breathlessness just from talking, cells on the deepest levels feel they are suffocating, to being brain dead some days despite having an intelligent mind (major cognitive malfunction), to emotional upheaval and turmoil (as a secondary cause, not the main issue), and much more including digestive issues for many and eventually trauma and PTSD due to living like this for so long with no validation or support/help while being marginalized and not taken seriously. And no matter what you do to try and heal, nothing helps. It's all a cage.
With such little validation from the medical community (which fuels the lack of understanding of society), all of the superficial/wrong tests are given which reveals all is normal. So, they push psych meds on you and tell you it's all in your head instead of questioning further or doing any kind of functional medical testing, but insurance doesn't cover much of anything that is relevant or helpful along the lines of testing. It only covers the tests which don't tell you anything. If it shows nothing, then you can't get help and insurance doesn't have to pay for anything; the illness is not validated, no research is funded. Any research into this has been thwarted and suppressed with very little funding given and scientists (who fund research out of their own pocket) who actually start to uncover answers, careers are ruined and info censored. CFS and the name (nor the new one of SEID) does not do any justice to describe the seriousness of what's happening in our bodies and was intentionally called this to downplay it and confuse it all. There is a massive cover-up for some reason. I know vaccines are a big part in this cover-up. I haven't really told my own story here of cause, as it's long and in another note, but vaccines were directly involved as a big part of my health decline into CFS. I know there are many variables for each person, as it takes many variables to get so ill, making it very complex, but without those vaccines, I wouldn't have tumbled so far into illness.
More awareness is needed! More awareness to bring compassion and understanding, as this is as serious as AIDS (and CFS has been called non-HIV AIDS - because it is an acquired immune deficiency syndrome), but also more awareness for research into these toxicity illnesses in terms of how to heal them (this includes Lyme, CFS/ME, MCS, and Fibromyalgia etc.) Too many are suffering so immensely, invisibly, alone, and lives have been more or less taken. This can't go on like this. The silence has to end.
written by: Susan Marshall
Edited for Feenxrising by Madison Leach