As those who like our facebook page or follow our instagram, will know, is that we asked for people to get in touch and share their stories with us. This is because September is Chronic Pain Awareness Month, and Invisible Illness Awareness Week! Sadly both will have no ended, but we’d love to hear more stories, so do not be afraid to share your stories with us!
Here’s one of our stories sent in by a Jennifer, who has experienced so many things both mental and physical.
My name is Jennifer, and I’m a blogger, sometimes a freelance author, a cat mom, a feminist, a poetry lover, and someone who has lived with multiple invisible illnesses for most of her life. It started with Major Depression, which got diagnosed after my first attempt to end my life at the age of 15. I was put on medication and started therapy, but I had a long road ahead that I could have never foreseen. I developed an addiction to self-injury and also Anorexia Nervosa. I was hospitalized a couple of times, the longest time being for the eating disorder, because doctors told my divorced parents that I was going to die if I kept going the way that I was. (I am avoiding using any numbers here as possible triggers to others with eating disorders.) I have to add, I have a major problem with pro-ana websites, and social media that that is pro-ana, as they are basically telling people how to destory their lives and commit suicide. In the United States, tellng people how to commit suicide is illegal, by the way. If anyone has ever truly had an eating disorder, they know what suffering is, and I feel for you. Luckily for me, I was able to recover from anorexia. My therapist helped, but in the end, I had to do it mostly on my own. One day I was walking down a street in my neighborhood for exercise, and once again came across this woman who lived nearby, who was so emaciated she looked she belonged in a concentration camp. I cried. I decided, “I can’t spend the rest of my life like this. I would rather die than go on like this.” And really, at that time, I did not want to die. So eventually, I started eating a more normal diet. Sadly, today I wonder if my chronic, physical illnesses that have plagued me for most of my life are connected to my early life history of self-starvation.
The depression remained after the eating disorder was gone. I became suicidal again at the age of 20 or 21. I had plans to make an attempt with a method that would have definitely been fatal. (Again, I am avoiding using triggers here by leaving out details). I decided at the last minute not to do it, simply because I did not want to leave my younger brother and sister with a dead sister, since our lives were already difficult enough in our dysfunctional family.
But before then, I had already become physically ill. It started around the age of 19. I was working in a library, shelving books part-time, and also working part-time in my father’s office. I came down with what seemed like a cold, then the flu, then something worse that caused pain which eventually took over my entire body and was so severe I literally thought I was dying of a terminal disease. I went to the doctor, thinking there had to be something horribly wrong. He pressed on certain areas of my body, which I know now are trigger points, and announced nonchalantly that I had Fibromyalgia. It was 1994. Nobody knew what Fibromyalgia was then, including me. I had never heard the word. I was handed a pamphlet and told to go see a rheumatologist.
I’ll never forget the words of the rheumatologist when I first met him. He told me to act like I was 90 years old because I was now living in the body of a 90-year-old person, and to stop exercising. I left crying. I was in the prime of my life. Then I was sent for more tests, for more symptoms. I was tested for every autoimmune disease there is, because my body was presenting many signs of immune system problems. I was tested for gastrointestinal disorders, and then diagnosed with Irritable Bowel Syndrome.
I was diagnosed also with Endometriosis. This was all within a two-year period. I found out that most people with Fibromyalgia also had Chronic Fatigue Syndrome, and eventually, I was also diagnosed with that. In 1998, at the age of 23, I was seeing one of the best doctors in the country for Chronic Fatigue Immune Dysfunction Syndrome, and she diagnosed what was then called Neurally Mediated Hypotension, or Orthostatic Hypotension. In other words, it was Dyasutononomia. I did not know at all how serious that was then, or that I would be told 17 years later it was probably POTS. She told me she was surprised that I could stand on my feet at all since my blood pressure dropped 20 points after I stood for a few minutes. I was tested some more for other things. And some more.
Over the years, I cannot even imagine how many blood tests, CT Scans, MRI’s, X-Rays and other tests I’ve been given. They are countless. I have often felt like a guinea pig, with doctors trying various medications just to see if they would work, but never really knowing if they would or not, and often not even knowing what they were actually treating me for. By 1999, my diagnoses were CFIDS, Fibromyalgia, and Sjogren’s Syndrome, along with a mental illness which was not quite defined. That would become a serious problem for the upcoming seven years.
I was set to leave my grandparents’ home in Baltimore and my community college honors program, and transfer with a scholarship to Smith College in Massachussetts, one of the best women’s colleges in the country. It was my dream come true. I was so excited about it. But fate had other plans. I started to have visual hallucinations. Then I had delusional thoughts. I had olfactory hallucinations, which is where you smell things that are not there. So, I became floridly psychotic, but like most people who are psychotic, I did not possess the insight to realize I was psychotic, due to a condition known as anosognosia – not knowing you are ill. This would destroy many years of my life. Years I never will get back. I ended up in a homeless shelter instead of Smith College. Then, I ended up living in my car. I was mentally out of my mind, physically in agony and severely sick, but still I did not “look sick”, so you would have never known any of this from looking at me, and I could hold a conversation just like the average person and prevent anyone from realizing that I was delusional. My ability to do that was my Achilles’ Heel.
I ended up gong to Alexandria, Virginia, to live in the home of a friend of an internet friend, who I really did not know at all. I was going to rent a room in his condo where another roommate also lived. I was told I could stay rent free for a year. I ended up staying for three years, but I did pay rent eventually, as I got Social Security Disability Benefits. During my years there, I was hearing voices, seeing things, believing I was a CIA agent and a Manchurian Candidate, believing the world was ending, believing horrendous things had occurred to me in my sleep every night by strangers who took me from my bedroom, which never happened, feeling so paranoid that I thought people were listening to me talk to myself through walls and watching me through tiny cameras in light fixtures and fire sprinklers. I thought I was being followed all of the time, and I thought I was being sent on special “missions”, which I followed by paying attention to messages such as words I made out through license plate letters and numbers, and things people had written on scraps of paper in the public library. Eventually, I was homeless again, living in another shelter. After that, I lived in motels. And then, I ended up traveling to New Jersey on a train, acutely psychotic, and attempting suicide in a hotel room because I thought that World War III had started and people were being taken to concentration camps. I spent the rest of that summer in three different psychiatric hospitals in New Jersey. I don’t know anyone in that State. I just
went there because the voices and messages told me to. Eventually, the psychiatrist at the last hospital said I was going to be sent to the state hospital unless I went to Florida to live with my family again. I had no choice about it, as I did not want to go to Trenton’s state hospital. So I went back to Florida. It did not work out.
Between 2003 and 2005, I lived in numerous places in Florida, sometimes with my mother, once in a rented room, sometimes in a hotel, and in a couple of efficiency apartments. I worked several odd jobs, for very short periods of time. I ended up in another homeless shelter because my mother “didn’t know what to do” with me, so she took me there and left. From there, I ended up in another psychiatric ward. Eventually I attempted suicide in a very serious manner, which could have led to the death of not only myself but also other people because it involved a car, so I was lucky no one was killed. I was, unbelievably, not put into a psychiatric hospital after that, but just sent home. My final act to end my life was going to be with the use of an even more serious method. By this point, I had been floridly psychotic for seven solid years of my life. I was unable to function like other people and did know what reality was, or even who I was most of the time. I thought I was Anne Frank reincarnated, Jesus Chriset reincarnated, L. Ron Hubbard (founder of Scientology) reincarnated), that the world was coming to an end, and also that I ahd been pregnant for four years with a baby that was now dead inside me. I did not think there was any way out but to die. But I was stopped by the police. I credit those police officers with saving my life.
After that, in the hospital I met the doctor who is my psychiatrist today, a kind person who listens and is wise. He told me I had Paranoid Schizophrenia. I was committed to long-term hospitalization for six months in a public faciliity. My diagnosis was changed to Schizoaffective Disorder while I was in there. When I read Dr. E. Fuller Torrey’s book, Surviving Schizophrenia, and when I watched the movie A Beautiful Mind, which my psychiatrist had me watch in the hospital after he diagnosed me, I felt, for the first time, like I knew what was happening. I knew I was mentally ill. I was put on antipsychotic, antidepressant, antianxiety, and sleep medication.
Once the mental illness was controlled, although I still had symptoms of psychosis, I was able to function enough to live in an apartment of my own, work part-time and go back to school at a community college. I then started to seek treatment again for my physical health, which had been neglected for years. Often, even though I had presented with numerous physical complaints, they were considered psychosomatic and ignored, because of the fact that by now I had a lengthy mental illness history. In fact, recent research shows that someone with an illness like Schizophrenia or Schizoaffective Disorder is actually more likely to have an autoimmune disease. I wish more doctors were aware that it is not uncommon for people to have both a chronic physical and a mental illness simultaneously.
My rheumatologist, who I met in 2006 and who is still my doctor today, is the type of doctor who does understand that fact, and never dismissed my physical symptoms as psychosomatic. She treated me for Sjogren’s and Fibromyalgia, but she also knew there was something more wrong. Again, more tests were done. In my 30’s, I was finally diagnosed with Lupus. I was also treated for hypothyroidism, and osteoarthritis in both of my knees. The antispychotic drugs make everyone gain weight, and they had put over 100 pounds on me in less than two years, so I had done damage to my knees, I’m sure. My fatigue was terrible, the pain was widespread and awful, and I still had the symptoms of Dysutonomia where I would feel like I was going to pass out as soon as I got out of the shower.
In 2006, I went to a doctor who was supposed to be an expert in Dysautonomia at a famous hospital in Florida, and he told me that I did not even have it. I did have peripheral neuropathy, and ten years later I learned that he had actually found it to be autonomic neuropathy, which, my two neurologists now tell me is what caused my Dysautonomia. They say the autonomic neuropathy was caused by Sjogren’s Syndrome. This year, I was dealt a terrible blow. After years of functioning okay with the Dysautonomia, aafter working part-time for ten years with eight years being at the same employer, and after working for over twenty years on a college degree I was about to finish, I got horribly ill. Stomach pains started, and then, I ended up nearly passing out and landing on the floor at work, causing my coworkers to call 911. Then, it happened again, when I tried to return to work.
I was released from the hospital four times in one month with no diagnosis at all. I was told ‘We don’t know what the problem is,” and sent on my way, after repeated testing. Eventually, I could no longer walk. My legs gave out. I met a neurologist who knew about Dysautonomia, something I had never mentioned I had a history of in the hospital due to the fact that the “expert” in 2006 had said I did not have it, and he told me that I had it. I smiled and said, “I know. I was diagnosed with that in 1998.” I was put on medication, but sadly, I was not able to walk again without a walker. Nine months later, I still can’t. I never thought I’d need a walker at all until I was in old age, but here I am at 41 using one every time I leave home. I rarely leave home. I can no longer drive, due to my light-headedness, so I am confined to home except when I get cab rides through Medicaid to go to doctors’ offices or someone takes me somewhere. I have been sick most of my life, so I do not have very many friends. This leaves me really isolated.
After I had to stop working, stop driving, leave college in my final semester of my BA degree, move out of my second-story apartment because medical professionals thought it was unsafe for me to use stairs, go through three months of home health care, and adjust to a new way of living in a new apartment, I got pretty depressed. It was hard to deal with all of this devastating change. I had always valued my independence. Now, I cannot be very independent. I cannot get groceries when I want to. I cannot go to McDonald’s when I want to. I cannot go for walks in parks and observe nature when I want to. I cannot do a lot of things I used to like to do. Since I was also diagnosed with Neurogenic Bladder this year, I had to learn to catheterize, which is something I will now have to do for the rest of my life. I am sicker now than I hae ever been before, physically.
However, throughout all of these years of illness, I did accomplish some things. I wrote a book with a co- author/illustrator called Episodes of Schizophrenia, wrote a chapter in a book called Parts Unbound: Narratives on Mental Illness and Health, wrote a blog for eleven years about Schizoaffective Disorder (which is now offline), volunteered for the National Alliance on Mental Illness for eight years and served on their board of directors in my county for four years, and became a public speaker about mental ilness and told my story to high school and Job Corps students, community groups, mental health professsionals, and even police officers, when I participated in the Crisis Intervention Team trainings where law enforcement officers learn how to help people in mental health crises. Since writing is my passion and has always helped me through everything, a couple of months ago, I started a new blog about my life now, with serous chronic illnessses. It’s called Longing to Be Vertical, since I have to spend most of my life horizontal. I hope one day to be back on my feet, back to work, back to school, and back to driving. But for now, I attend therapy and see doctors weekly, take a lot of medications, and work on accepting things the way that they are one day at a time. I use a shower chair, and my walker with a seat on it so I can sit when I feel light-headed. I have a home health aide who comes in three times a week to help clean my apartment and a food delivery service through Medicaid disability insurance that brings me some frozen meals. All of this is a different way of living, but you cannot always choose the hand the you are dealt. You just have to play it.
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