*To be clear, I do not believe in normal. What is normal?
Through the years, as a means to survive, I’ve sculpted my social-media so that I don’t have to listen to a lot of otherwise very offensive stuff about the experience of those of us with extreme sensitivities, and iatrogenic and chronic illness. Still, because I care about some of the folks who continue to say insensitive, ignorant things about us, I do encounter it from time to time. In fact we cannot hide from the ignorance in the world about our experience and still live in the world and so I’m entering a phase of healing and learning that is helping me re-enter the world. That means facing such insults daily. Microaggressions against us is the norm. I plan to learn to be in this world and so I need to learn to metabolize such violent communication. Below I share my first attempt to do this with some clarity. I’m responding to someone I actually love very much who has been part of my social media scene for many years. He posted a status update dissecting those of us with chronic illnesses and hypersensitivities that included calling our experience hypochondriacal.
My response (this is a very early attempt, I intend to develop this mode of communication and SO MUCH is left out of this brief response…please feel free to add your own discoveries in the comments):
Calling these issues simple hypochondria is oversimplifying as well as making it clear you do not understand what is happening at all. These are gut and nervous system issues in general that take on many different flavors in different people that have very real physical underpinnings.
Oversensitivity and hypersensitivity is a real phenomena with too much data coming into our systems. Managing input becomes extremely important. For example (because he spoke to food issues in particular ): We discover that food and digestion cause overstimulation (along with all other inputs of daily living) and we further discover that certain foods cause more stimulation than others (having profound gut impairments do that). Most of us are not aware of the details because the overwhelm is daunting. Food is relatively easy to control as opposed to most other inputs. We become afraid and given professionals across the board do not know how to help us and we are told we are hypochondriacs, for example, the fear gets pretty bad. It helps somewhat to control input we discover and so we do. Sometimes it helps a lot. It doesn’t really matter how we control it once we start controlling it certain aspects of the experience calm down. The edges, so to speak.
We do become aware of phenomena on a finer level than most people. Of course there is so much din and cacophony that we also misinterpret some of our experience. We are no different from the rest of the human species in this way misinterpretation of experience is the norm.
Food is the easiest thing to control. And indeed we find there are differences between foods and how they interact with the gut and therefore make us feel. The gut hypersensitivity is real.
Anyway that is just a wee bit primer. I won’t be sharing all the other insights I’ve gleaned over the years in a forum that has framed the issue in an overtly hostile fashion. Whether or not you did that intentionally it’s the case. We have to deal with this kind of disrespect everywhere we go. I’m happy to discuss with you one-on-one what I have discovered if you are actually interested in hearing about it. There’s not very many places to discuss this openly even among those who are suffering because most of us don’t have the privilege to navel gaze for 10 years like I have so that this level of detail feels simply like another layer of chaos we cannot take in. That privilege of navel gazing has not been enjoyable however it has been extraordinarily revealing and has indeed lead to healing as well.
The sensitivity is real we all learn to manage it differently and have varying degrees of consciousness about exactly what’s going on. Many of us certainly have more of it than you do in this paragraph but there are very few places to share what we’ve come to understood even among ourselves.
Update: these are holistic broad-spectrum issues. EVERYTHING matters...and that includes trauma and early life experience etc. I stayed very small for the purposes of this response to this one man.
Update number two: my comments fell on deaf ears. This was heartbreaking as I considered this man a dear friend. Not exactly a close friend as he’s a social media friend but he has been for many years and I love him. This sort of thing is a blow to any of us. And it certainly didn’t make me feel good about my capacity to express myself when sharing with someone I care about so much. I offered to speak to this person I believed was my friend and there wasn’t even an interest in following up at all. It’s very sad.
More on hypersensitivy
More on the somatic experience of hypersensitivity
More on mindfulness and hypersensitivity
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i am loving all the comments and feeling the support between us! It feels lonely to have needs and be hypersensitive amongst all these bulls just stomping on everything and everyone! Most of the time I need(and I take) the space to contemplate every exchange and transaction with food and people and environments.
Yes constant mindfulness certainly helps us navigate it all doesn’t it? For me it’s really led to healing as well and continues to do that. The more I allow and understand and watch the more I make choices that help heal.
Well said Monica. I would expect this friendly blog community to be supportive and loving
It’s kind of like pouring water on a rock- it gets wet but nothing sinks in- these forays into Worlds of Different Understanding. When people really resist understanding there isn’t much you can do except be kind….they’re afraid….and sensitives of every kind DO scare people. “Is that so?” continues to be helpful I find in situations where people are literally dissing everything I do in that off handed, oh, you/it are just (fill in the blank). But the issue of gut health is in fact a very concrete one, and when you remember that the gut, the heart, and the brain are all made of essentially the same stuff (and there’s actually more serotonin in the gut than the brain!) you start to understand the reality of how you are functioning….and ultimately it does make it easier to decide what you put into your mouth, and thus your heart and mind. It takes a long time, yes. You don’t do what others are doing and that can be rough. Healing does happen though and we all, ultimately, must do that for ourselves. You always present these things in a compelling, clear, and calm way- which is wonderful. Thank you!
I second that emotion!
I did a little update in the main text for clarification: Update: these are holistic broad-spectrum issues. EVERYTHING matters…and that includes trauma and early life experience etc. I stayed very small for the purposes of this response to this one man.
I am still trying to emerge from my bubble. The “who is safe to share with” kind of bubble. Really to me right now, the reentry is awkward at the very least and since my communication skills are sometimes brutally honest in speaking with “normals” my forays into social connections leave me exhausted. The complex trauma, of which I am reminded of each day leaves me at night with a kind of “heart pain” I can only describe as a broken heart. I know I’m off topic. I’m doing my best.
oh, yes, I hear you sister. I’m having the same bumps…they do slowly get less crazy…AND it’s really important to go at our own pace and take lots of breaks. In the end this is about listening to our bodies and really letting them be in charge…the life-force within knows just how to heal us! And not off topic at all…this is holistic healing. Body/mind/spirit. The emotions and trauma are a key part of it. We’re all broken hearted. These are illnesses that feature broken-heartedness at their core. Love to you.
My grandmother had a little dog who she made stay in a little box in the back part of her trailer. His abode box was just outside the bathroom and you had to try and navigate by him to get to it. He, in his attempts to have connection to someone, anyone, would bark and nip your ankles. My grandmother would then tell at him, “Get back in your box, Tiny!” And so when I reflect on this little creature and his desperation it sometimes puts things into perspective for me when I need to be succinct.
omg, yes. how heartbreaking and what a perfect example. Ouch.
Hi, I’d like to add something about hypersensitivity and talking with “normals” (though that is lumping them together, which I find can leave me over-estimating those who seem to live life more openly or productively). I agree that their categorizations of us can be hurtful, and can often arrive by surprise even when they may be trying to just converse – but their ignorance and negative assessment show in their words. I think much of the country is dealing with this today, as worlds come together more quickly, after centuries of separations. I’m learning as I age, to include truth telling and care, which saved me in my own rejection of scorn – AND sometimes ignoring even the most hurtful insults, and I’ve found to my surprise, that others did want to be friendly, they just don’t have the concepts, and for many levels of engagement, don’t need them. I need to speak in a TED talk, or give lectures, and be less avoidant of those who misread, take misunderstanding with a grain of salt, for in the end, we live together on the planet only brief lifetimes, and dissonance is one piece among many other aspects to share!
I purposely put quotes around “normals” to suggest it’s not exactly appropriate…titles on blog posts need to be catchy (for better or worse) … I was being facetiously imprecise. And yup, I share for the same reasons. The response was written for a man I care very much about who I expect will grapple to understand what I’m saying…..finding the words to articulate is a learning process and hence the reason I share them here with others who’ve yet to learn to do that…and I, indeed, am still learning. We all are. thank you.
(I don’t actually believe in normal)
https://beyondmeds.com/2013/12/02/what-is-normal/
Thank you again for your posts, Monica. The community I’ve found online is invaluable in my being able to understand and survive the withdrawal journey. I’m learning the importance of doing your own research about what exactly is happening in our bodies during this process. Thankfully I’ve not had to answer to anyone not capable of appreciating what I’m experiencing yet, but I think when the occasion arises, my reply will be for them to “look it up.” It’s hard to argue with solid scientific evidence. This is especially true if the evidence is coming from multiple sources. Though there will always be those who will refuse to keep an open mind, hopefully by leading people to evidence backing up our individual withdrawal experiences, we can help the “normals” to take us seriously.
the scientific community doesn’t understand what is happening just yet (for the most part), that’s part of the problem.
Thank you for your willingness to be honest, state the truth and be exposed to extremes of criticism and disbelief. You are courageous, a warrior of light and I wanted to tell you I see you, appreciate you, commend you to the life force of God and the universe! Many blessings, I’m seeing you in perfect health and balance! N
On Wed, Dec 12, 2018, 6:09 AM Everything Matters: Beyond Meds wrote:
> Monica Cassani posted: “Through the years, as a means to survive, I’ve > sculpted my social-media so that I don’t have to listen to a lot of > otherwise very offensive stuff about the experience of those of us with > extreme sensitivities, and iatrogenic and chronic illness. Still, b” >
I am now reading up on the microbiome, and its very interesting, I have severe food problems, any change from my daily affect me, and meds are a no no, I find it hard to believe with all the brains in this world that they cant find an answer to what we need to put us right. Its been 12 years for me now and my aching and tiredness is getting worse
I stopped looking to “them.” I’m finding answers and yeah, it’s slow going. “They” truly have no clue…we, together, are starting to. Part of the issue is that everyone’s answers are unique to them. These are paths of self-mastery.