It took me a long time to understand why my physical collapse to Ehlers-Danlos Syndrome (EDS) caused an equally emotional one that precipitated a total separation from my biological family. Suddenly, I was every bit as angry with them as if I was back there living in the time when I was still beholden to them. Like I was still somehow that powerless child forced to live in a world determined by someone else. That world very much resembled a modern day version of Cinderella, only there were no Fairy Godmothers to be found. There’s nothing idyllic about this tale.
The primary mode of control used by my parents and one of my siblings is a popular tool used by all abusers called gaslighting. Gaslighting is emotional abuse that aims to make the victim doubt their own perception of reality and memory. Put simply, it’s an expert way of manipulating someone into seeing things your way. Employed regularly and methodically, it strips the abused of all confidence and self-reliance. There are no rules but those the abuser makes from one day to the next and even if you record them, they will find a way to argue their way out of them by point of context. It is a world of quicksand and there is never anyway to win against an expert at the game of gaslighting.
It really comes as no surprise to realize that I was gaslit the whole of my childhood about the state of my health. When I went to my mother about the severity of the pain in my feet and legs after working just a few hours as a teen, I was told everyone’s feet and legs hurt and I just needed to deal with it. My pain was not unique or of any concern. After all, my mother had waited tables in high heels to put food in our mouths and I should be grateful I didn’t have to do that. All of my little accidents and trips were because I was a careless, clumsy kid and why didn’t I just watch what the hell I was doing? Even when I suffered frequent bouts of chronic bronchitis and sinusitis, I was told I was playing it up and making it more than it was and would get yelled at for my uncontrollable coughing. When my periods came accompanied by severe cramping and bleeding, I was being weak and wasting too many pads. I was neither entitled to my pain nor allowed any sympathy for it and I better not get caught belly-aching over it or thinking I could shirk my responsibilities for even a minute.
Those duties began at an early age. My mother worked opposite my school hours the whole of my childhood and I became my own primary caretaker at around age seven, when my oldest sister left. I had the added responsibility of being my brother’s primary caretaker at his birth when I was eleven in addition to caring for the house, helping my mother with the laundry and doing most of the cooking. I was treated not so much as a child, but as an adult, responsible for the functioning of a household along with my schoolwork and often carried the burden of the very adult concerns my mother would litter me with during our sparsely spent time together.
My stepfather was an angry alcoholic law enforcement officer hell bent on controlling my every move when he was at home and drinking our money away and chasing other women when he wasn’t. He wasn’t very good at controlling my mother; no one ever was, and he seemed to delight in taking it out on me. I don’t know why. Perhaps because I most looked like my mom or I reminded him of her some other way. In my early teen years, I began to fight back and he pulled his service weapon on me, finally convincing my mom to leave him for good.
She remarried when I was 16, somehow to someone even worse and my real health problems were only getting started. My first job brought about my first real pain problems. I would stand behind the doughnut filled glass case and smile through the pain of aching feet while serving up the little cream-filled confections, praying for the customers to go away so I could go in back and sit down. It was an easy if boring job, but I hated it because my new step father would drive me there on his motorcycle, whipping around curves at 30 miles over the speed limit and I would get off his bike shaking and terrified, so I opted to find a job within walking distance.
For my seventeenth birthday, they bought me a car and then told me two weeks later I had to pay for it with my tips. I was only allowed to keep my paycheck, which was for $2.01 an hour less the taxes for my tips. I was earning $15 a week for the excruciating hours I spent on my feet. Since my stepfather also determined that it would be a good lesson in economics for me to purchase my own clothing, toiletries, lunches, school supplies, and pay my insurance, I was struggling mightily.
My new stepfather was severely affected by bipolar disorder and had wild mood swings. He also had a terrible cruel streak and a penchant for creative punishment. I believe he was a sociopath. I was so often grounded from the car I was paying for that it might as well have been a paper weight. More than once he destroyed my clothing, cut the cord from my phone or destroyed the furniture in my room as punishment. Once, he broke the window in my car and I suspect he cut my brake line. Most of these things I had to replace on my own. My mother came to fear for my life, but she would not leave him, so she began to call me and tell me not to come home or to flee if I was already there and one of his moods struck.
I began living on the charity of friends, careful not to wear out my welcome for too long at any given place. My first choice was to stay at the Miller’s, with my best friend and his single mom, but she could only take so much of me, so off I would go to stay with the Burmeister’s who had so many kids one more didn’t seem to make that big of a difference, or to crash on the couch under the watchful eyes of my fiancé’s parents. Occasionally, I would find I had no place to stay and would sleep in my car, parked somewhere in my neighborhood where I felt safe enough, but didn’t fear discovery by my stepfather and was still close enough to the gas stations so I could use the bathroom.
During one such period of exile, I got a very bad feeling and decided to drive past the house to check on my mother. It wasn’t my habit to do so and I don’t really know what made me do it. There was a police car in the driveway and the car was gone. I ran into the house and my mother was being interviewed by the police. She told me my step father had forced her and my seven year old brother into the basement, threw lamp oil down the stairs and then threw lit oil lamps down with it in an attempt to set them on fire.
“Are you finally ready to leave?” I asked.
She nodded. I didn’t wait for her to change her mind. I started packing things into my car.
It was January of my senior year of high school. Despite my vagrant status, I had every intention of finishing high school the same way most people do. I’d even managed to make the honor roll a couple of times. Still, when I’d heard that early graduation was an option for people who met the requirements, I had been tempted. It would allow me to work full-time and get set up in a place of my own, if my mother would agree and sign off on it. Still, I was in no rush to terminate my childhood and take on the full responsibility of adulthood, as hard as my life was.
But we didn’t have any place to live, my mom was working 60 miles away and my sister lived 10 minutes from where she worked, so when she offered us a temporary place to stay, my mother took it. I decided to graduate early rather than try to commute 60 miles to school every morning or continue to couch surf. I met the deadline to apply within days and had to take two night classes to fulfill my last requirements before taking my place with the rest of my class in ceremony the following June.
Before I did so, I married the man I had promised to under the pressure of escaping my house. It turned out to be an even trade-off, as unhealthy people aren’t very good at picking healthy mates. He was a master manipulator and sociopath in his own right. Once we married, he wouldn’t hold a job and left me to be the primary earner. I went through a couple of jobs, trying to make as much money as possible and find something that didn’t hurt my feet so much. In the last few months of our marriage, I took a job as a certified nurse’s aide, getting training directly from the home that hired me.
I worked in a unit comprised primarily of Alzheimer’s patients. I adored my patients, who were mostly like children, given their advanced states, stuck in fantasy worlds or so far regressed that speech and normal adult function had long since left them. I cared for them like newborns, changing their diapers, washing and feeding them. It was grueling work, requiring a great deal of strength and energy and every nine hour shift left me exhausted. We had no devices for lifting, though I know some existed. We had one patient who weighed over 350 pounds and one night I was requested to help lift her with another aide who was approximately 5’ 2”to my 5’ 8” and maybe 105 lbs to my nearly 180. Though I lifted properly, physics simply wasn’t on my side, and I felt something give in my back and pain like I’d never felt before. The doctor at Urgent Care told me I’d torn every muscle in both quadrants of my lower back and put me off work for a week with some muscle relaxers and pain killers.
The nursing home refused to believe I had lifted properly and blamed me for the accident. After that, every time I tried to lift a patient, my back would reinjure, so I was forced to leave. I complained about the problem to my GP, but he told me that I simply needed physical therapy and everything would be fine. It was not. I went from job to job trying to find something that would work, but everything aggravated it; standing in one spot for too long, walking too much, lifting anything. I began job hopping to try to escape the never ending pain of a bad back and hurting feet that I’d been told by family and professionals alike to just deal with, because I was too young for there to be any real problem. Who was I to question men with medical degrees when my own parents blew me off.
My time in between jobs was the only time I wasn’t in constant pain, but of course it brought other worries and problems. It put me back in my mother’s home, where there was always much discord. Me, with all my grudges over how she never put me first or protected me from my stepfathers and manipulated and used me so expertly the whole of my life. Her, with her disapproval over how I was leading my adult life, convinced my only problem was my laziness. My little brother, warped and twisted under the tutelage of our stepfather and a mother who allowed him to run wild as a sort of way to make up for it.
I managed to get an office job here and there, but they almost always involved the heavier lifting of office jobs like working in file rooms and I hungered for something easier like data entry, but didn’t have the typing skills to land them. I managed a teller position, but it required standing and I discovered pretty quickly that the demand of counting so much money and the constant strokes of 10 key made my hands ache terribly along with my legs and feet from all the standing.
I’d avoided the idea of college to this point because I suffered from terrible self-esteem and believed myself too stupid to succeed at the rigors of academia. But I’d done quite well as a teller and my boss had aspirations of promoting me as many bosses had. I’d also managed some therapy and was discovering much about myself and my real value as a human being. I began to wonder if perhaps I might be more intelligent than ever given credit for. So I took a chance and enrolled in a couple of classes at the local community college at twenty four. By then, I still didn’t really know if there was something wrong with me or not, but I had a feeling that if I was going to survive, I had to escape manual labor and aspire to doing something more cerebral.
As it turns out, I did exceptionally well in school and loved the entire experience. I still have a deep, abiding passion for education and would probably be an educator today if it were possible. I still had to try to work as much as possible while in school and it took me a long time to finish, in part because of torn tendons, back issues and illness. It took me 8 years to finish with a BA in Women, Gender and Sexuality Studies.
In the duration, the damage to my body only compounded through my own weight gain, the physicality of navigating a college campus daily, working odd manual labor and customer service jobs, and generally just not taking good care of myself. I had no EDS rule book. I had no idea that the ways I was working out and the things I was doing for enjoyment and pleasure, such as dancing, wrestling around with friends and hiking, would be a detriment to my health for the rest of my life.
By the time I earned my degree, I had also earned moderate degenerative disc disease, kidney disease and the beginnings of POTS and marked cognitive impairment to go with it. I lasted five years in the work force before my compounding conditions forced me into disability, all because I was so used to being told that my pain was okay and that I felt I had no right to question it. That I should be able to just survive it. That I was just like everyone else. Deal with it.
Of course by then I was unable to work, had an advanced degree of my own despite being flat on my back in need of herniation surgeries and fighting considerable cognitive deficits and no longer feared men in white coats. I was determined to figure out what was wrong with me. This didn’t make it any easier, though. It would take me nine more years to get a diagnosis of EDS, and that was only after I discovered the illness and connected all the dots myself, finding a qualified specialist to diagnose me. But this isn’t my failing, it’s the failure of the American medical system to properly train their doctors on so-called “rare diseases.”
As I was newly confronted with the fact that the treatment by my parents and stepparents amounted not only to a life of emotional trauma that I have to actively work at daily to keep from affecting my life but also my physical ruin, it was simply too much. It was also compounded by the fact that each family member had come to use me again, each in their own way. To me, this felt like they neither believed I was sick or respected it, just like old times. Rather than acknowledging these feelings head on, my subconscious buried them and in effect they came bubbling to the surface as unchecked as that old anger and resentment I harbored for so long until I took them to the student mental health clinic and carefully unpacked them during my years at college.
Often these realizations surface first in our subconscious and it decides whether or not we’re ready to deal with them in the naked light of day. Sometimes these truths stay with us, lurking around only to trigger bad protective mechanisms created by our damaged selves. I believe this is what happened to me. As a teen, I harbored deep chasms of anger to protect myself. Every emotion I felt twisted into anger. I had room for nothing else. So the anger rose again. I became incapable of dealing with my family. One by one, I rejected them outright, but still this anger burned. They caused me to shut down emotionally, trusting no one, but still my anger burned. It was only through being willing to take the time to sit with myself and dig deeply into these feelings and what might be motivating them before I could locate the true source and get that anger back under control.
I suffered years of bad dreams where I was once again that child, being bullied and manipulated over and again by family member after family member, some of which who are long since gone. I thought, why now? When finally I have found the courage to erase them from my life and they have stayed gone. Why now? What do you want from me? It wasn’t until I made this connection, this realization that I was able to fully make peace with it and move on. And only then could I make peace with the fact that I have an incurable genetic disorder and all that it means.
In large part, I don’t regret having gone through it. I regret being mired in it for so long. I’m glad to have severed those ties and I have no intention of reinstating them. I have long doubted that victims and perpetrators are capable of forming healthy relationships with each other once patterns become set and I have never been able to achieve a healthy relationship with any of my family members. Some claim to have “done the work,” yet they still attempt to lie and manipulate in order to get their way and expect that I’ll just accept it and continue to do for them, as was my former role. My sister, a friend of Bob, said she was going to make amends to me when I let her back into my life after a break of several years, but never did and then consistently proved time and again that she was really no healthier than she ever was, at least in her conduct with me and it’s been pretty much the same thing with each. The most telling thing about this is that I attempted to set boundaries with each of them, they blew up at those attempts, said terrible things in very public ways that weren’t true in order to control what people think of me and then walked away without ever looking back. I suspect they haven’t come crawling back because they know I have nothing left to offer them, given my broken body and bank accounts, nor will I allow them.
I did inform them of my diagnosis as I felt it was my moral obligation to do so since EDS is a genetic disorder and all of my siblings show some signs that they could have it, but I did nothing to encourage contact and thus far none has been made. My hope is that it remains that way, as I don’t want to invite any new strife. I do have nieces and nephews aplenty, however and it is for their sake that I did this. I only hope they have the sense to heed my warnings and act accordingly to help their children learn how to care for their bodies so that they can have much better outcomes than I.
Emotional stress takes a great toll on our physical health. If you have unresolved feelings of this nature lurking in your mind, I implore you to do the work necessary to take them on. You’ll not only find greater peace of mind, but better overall health and satisfaction. It may be painful work, but it’s worth it. We all deserve to be as healthy as we can be in all aspects of our health, be it physical, mental or emotional.