I quickly learned that being sick was more work than working full time. The constant self-advocacy, the never-ending rounds of appointments, coping with side effects and symptoms, all while trying to parent my child as normally as possible, was exhausting.
Although it was never my intention to be off work more than a week or two it quickly became evident that I could not do my job. The medication and therapy helped to quell the constant crying and eased the hallucinations but they cost me my ability to concentrate and pay close attention to detail. I had a hard time following conversations and tired quickly. As I adjusted to each new side effect and change in medication I had to learn to adjust to who I was without my career.
It took me a long time to be able to tell people I had a mental illness and there have been times when I have chosen not to share. I have had people ask me what caused my PTSD, expecting me to answer ‘car accident’ or ‘mugging’. I don’t always feel comfortable sharing with strangers that a series of traumas, beginning in childhood until I fell apart after my brother’s suicide, led to my needing to be at home full time.
I had to learn to be OK with myself and that was, and is, a long process. I tried to treat my illness with the same dedication I had treated my career. I went to therapy three times a week. I attended group therapy sessions even though they make me very uncomfortable. I tried cognitive behavioural therapy, dialectical behaviour therapy, cognitive processing therapy, art therapy, talk therapy. I read books, I did work sheets, I painted, I processed, and all the while I slowly shifted my perspective so that I was able to allow for the fact that this illness was not my fault. And I am not my illness.
The effects of trauma are the brain’s very normal response to something horrifying happening. The nervous system develops protective measures to cocoon you against horrors you wouldn’t be able to endure otherwise. Because the truth is, you can endure almost anything, as awful as that sounds. I have C-PTSD not because I am weak, or because I can’t cope with anything. Au contraire, I am fucking Wonder Woman in a crisis. I have C-PTSD because I was abused repeatedly as a child and my brain developed methods to protect me. I have C-PTSD because life threw a bunch of random shitty events my way and I coped with them as best I could with the tools I had at the time. I have been off work a long time now but I am emotionally in a better place than I was before I had a total mental breakdown.
I feel better about myself, as odd as that sounds. I have this label but the label isn’t me, it’s a name for a series of behaviours I am still learning to understand. I like myself better than I did before I had a breakdown. I forgive myself more. I have a better sense of personal boundaries. I know when a panic attack is coming and usually have a method in place to deal with it. I’m still afraid to take the bus but I manage to force myself onto transit to make it to my appointments. I don’t see or hear things that aren’t there anymore and I might need to take some medications for the rest of my life. The point of all this is, I have a mental illness. It will probably be with me in one form or another forever. But I am not ashamed of it. I am not less than anyone else because I am sick. We live in a culture that values health and invalidates the experiences of anyone who isn’t healthy, it’s seen as a weakness of character or some kind of personal failing. We’re told to pull ourselves up by our bootstraps, to just get over whatever is afflicting us. But you can’t get over something without going through it. I learned that the longer I resisted the fact that I was sick the sicker I became. I’m terrified to think what could have happened to me and my son if I had never reached out for help and if I hadn’t had the perseverance to pursue treatments that worked for me and learned how to say no to treatments that didn’t help.
My therapist often says the body tends naturally toward health. We want to be well. We want to be whole. Our instincts can lead us to wellness if we let go and let them.
After seeing the consulting psychiatrist I went for a sleep study, which is a fun thing where you go to a lab and get wires and sensors glued all over your body and are sent to sleep in a cold, strange room while cameras record you all night long. I went for the study because although I went to bed at 10 pm each night and slept until 6 am, I never felt rested, I had trouble staying awake during the day. I lived in a state of constant and total exhaustion. My limbs felt like lead and I had vivid nightmares every night. The consulting psychiatrist and the psychiatrist who ran the sleep study both came back with the same diagnosis based on my symptoms. Complex Post Traumatic Stress Disorder. It was the consulting psychiatrist, after delving into my childhood during her exam, who added the ‘Complex’ to my diagnosis.
After a long, searching discussion with my GP I decided to try an anti-depressant to at least get the crying under control so I wouldn’t humiliate myself at work. I was wary of being medicated but I wanted to be able to do my job and take care of my kid so I agreed to a low dose of something that I can no longer remember. What I do know is that it did not go well. I went on short-term disability from work while I coped with the side effects and started searching for a therapist I could afford.
I hadn’t realized how much of my identity was wrapped up in my career until I was forced to leave it. I loved my job. I worked very hard to get my job. I never dreamed I would be away from work longer than a week or two. I was a single, working mother, that’s how I defined myself. I never, ever thought I would become someone who had to sleep all day in a med-induced fog, whose whole life would become rounds of doctor and psychiatrist appointments, someone whose life became not an orchestrated series of goals met and accomplished but an endless series of days that blended into one another in their formlessness.
When I finally thought to tell my doctor that I was hallucinating I was a wreck of a person. Without my job to anchor me and with the side effects of the medication I slept during the hours my son was at school, leaving my house only to buy groceries, an ordeal that left me exhausted and terrified because I was convinced everyone in the store was out to get me, or to go to an appointment.
I was lucky to find a therapist who worked around the corner from my house so I could walk there, saving on bus fare and my growing terror of public transit. I started seeing the sleep psychiatrist regularly to monitor my medications. I went to my doctor every other week. I filled out disability claim forms and spent hours on the phone with the insurance company. My life that I had clung to so hard through every kind of upheaval was over and in its place was a tedious battle with myself. I had to let go of everything I worked for and dive into darkness, into what my therapist would call my dark night of the soul.
I have had the same GP for over a decade. I see her quite regularly and she knew that my brother committed suicide New Year’s Day. I have a thyroid issue that needs regular monitoring and hair loss is one of the symptoms of the thyroid condition. My hair started clogging my shower drain and my hands looked webbed with hair whenever I shampooed so I made an appointment to get my thyroid checked. My results came back normal but my doctor, knowing that my brother had killed himself six months earlier, said that sometimes a few months after experiencing a trauma, the body sort of sheds itself, so people will start losing weight and hair and maybe develop skin conditions. I had never heard of this but I mentioned, almost as an afterthought, that it made sense to me because I had been raped two days before my brother’s death.
I will always remember my doctor’s pause when I told her that.
Then she asked me a series of questions and did a thorough check-up for STI’s and HIV. We talked more about my symptoms and I told her about my uncontrollable crying, my exhaustion, my difficulty concentrating and how all of this was affecting my every day life, including my ability to perform at work. She made an appointment for me to see a consulting psychiatrist and referred me to a sleep specialist for an overnight sleep study. She was calm, non-judgemental, and concerned. At that point I didn’t mention the voices I heard or the way the floor seemed to shift and undulated beneath my feet or the monsters I saw on the subway. They seemed embarrassing, something I thought I could control if I just tried harder to clamp down on my feelings and ignore the very real symptoms that were taking over my life.
A few weeks later I met with the consulting psychiatrist for a painfully interrogative appointment. She barked a series of invasive questions at me for about forty minutes until I broke into a panic attack and began hyperventilating. I can’t remember what she asked but I remember feeling stripped naked and humiliated. I don’t think today I would react that way to an intake interview with a psychiatrist but this was my first time seeing one and I felt raw and frightened. I didn’t want to think that I needed help. I thought I could handle whatever life threw at me. I was tough, I was strong. I was, I thought, unbreakable. I was a little bit wrong. I am tough. I am strong. I am not unbreakable. No one is.
2006 was a challenging year.
I started the New Year by separating from my husband, moving to a new apartment, and switching jobs. Those were the stressful, positive parts of the year. Then I got pregnant. Then my father died. Then I had an abortion. Then I was sexually assaulted by a friend. Then my brother committed suicide.
It was an action-packed year.
Every time a new, terrible thing happened, I handled it by telling my counselor. At that time I was regularly seeing a social worker who was a Buddhist practitioner. I was preparing to start an intensive meditation course and part of that preparation was seeing a counselor every week and learning about basic tenets of Buddhism. So when something happened, I would dutifully relate it to my counsellor. I would read a book like Pema Chodron’s ‘When Things Fall Apart.’ I would go for massage therapy to take care of myself and buy myself ice cream as a treat, as a small kindness. Then I would go to work and work and work and work. I took one afternoon off when my father died. I took one day off after the abortion. I was sexually assaulted the day before New Year’s Eve so I had a few days off but for the most part, I just kept going. I was determined that no matter what happened to me, I was not going to let it interfere with the career that I had worked so hard for. I was not going to let any event, no matter how stressful, change the way I interacted with my son. I was a single mother in 2006 and my son was my first priority. I didn’t want him to see his mother beaten down by life, so I kept my head up and worked even harder.
Apparently, the longer you ignore your traumas, the more horrific the forms they take when they finally leak through your carefully constructed exterior. In my case, I went crazy. The worst kind of seeing things, hearing things, living in a horror movie crazy.
I started hearing voices whispering about me, calling me names. I saw the world fly apart into shards of meaningless images. I grew paranoid about taking public transit or being in crowds, convinced everyone around me was plotting against me. Strangers looked like horror movie monsters. I would be sitting at my desk at work and feel my cheeks grow wet and wonder why, only to realize I was crying. My hair started falling out. I had nightmares all the time. I felt like the walls were breathing. I was able to keep up a semblance of normalcy until I started meditation classes. It was during these times of silence and reflection that I became overwhelmed with grief and would sob helplessly, loudly, relentlessly, until I was asked to leave the class permanently. After I was kicked out of meditation class I decided I needed to see my doctor.
It’s the Canadian Mental Health Association’s 62nd Annual Mental Health Week. Events and activities are planned all around the country from May 6 to 12 to help raise awareness and support.
I have a mental illness. Actually I have two. As I state in my bio I have Chronic Post-Traumatic Stress Disorder with a side of Dissociative Disorder Not Otherwise Specified, wrapped up in some depression and topped with anxiety. The difference between Chronic PTSD and the PTSD you’re probably more familiar with is that acute PTSD usually occurs as a result of a horrific trauma like a car accident, or being engaged in warfare, or getting attacked, or being an officer of the law and having a violent encounter. Symptoms include avoidance of anything that reminds the sufferer of the trauma, nightmares, flashbacks of the trauma, high anxiety, constant vigilance to threat, changes in mood, sleeplessness, panic attacks. These symptoms are intrusive and pervasive and make it very difficult for the sufferer to lead a normal life.
Chronic or Complex PTSD occurs when there are a series of traumas, usually starting in childhood and experienced over and over again. This diagnosis is not formally recognized by the DSM-IV but is one that doctors will assign anyway. Complex PTSD can occur when there is a history of long-term systematic abuse, like survivors of concentration camps, prolonged childhood sexual abuse, long term domestic abuse, and being held prisoner. Whereas acute PTSD has a treatment protocol that can be quite successful, Complex PTSD is harder to treat because you’re integrating not one but sometimes many or years of trauma.
Dissociative Disorder Not Otherwise Specified is a little tricky to explain, it’s confused with Dissociative Identity Disorder which is the proper name for the term ‘multiple personality disorder’, a condition so widely misunderstood that I won’t add to confusion by attempting to explain it. Sometimes people use the terms ‘split personality’ or ‘bipolar’ when they really mean someone who changes their mind or who shifts moods a lot. Sometimes people use the characters of Dr. Jekyll and Mr. Hyde to illustrate their point, even though that’s a short work of fiction and has nothing to do with real life.
To explain DDNOS, I’m borrowing from the googles.
Dissociative Disorder Not Otherwise Specified (NOS) is diagnosed when a person has certain symptoms of a dissociative disorder, but does not necessarily match the criteria completely for any one disorder. Dissociative Disorder NOS includes the loss of control over mental processes, awareness, memory, identity, personality, perception, physical connection to reality, et cetera.
Symptoms of Dissociative Disorder NOS:
- Disconnection from environment
- Disconnection from identity or personality
- Amnesiac states such as in Dissociative Amnesia
- A feeling of being in a dream like state or in a movie
- Anxiety or panic attacks
- May also exhibit mood disorders like depression or bipolar disorder
- Out of ordinary wandering or traveling
- Loss of certain memories or awareness of self
- A sense of “absence”
Causes of Dissociative Disorder NOS
Because Dissociative Disorder NOS is not a fully encompassing diagnosis, it can be hard to determine where exactly the disorder came from. Most dissociative disorders are caused by traumatic experiences or overwhelming psychological stress. They can also run in families, but usually are the result of some difficult event that causes the affected person to dissociate as a kind of defense or coping mechanism. Often, dissociative disorders develop after child abuse, or experiencing/witnessing a horrible event. In this way, it becomes a tangential form of Post-Traumatic Stress Disorder.
So this is my diagnosis, and the above symptoms are some of the symptoms I live with every day. Tomorrow I’d like to share with you how I got this diagnosis. I’d like to tell you how I went crazy.
I wrote a post about my struggle with endometriosis that was published on xojane last week. Can I just as an aside say “squee” for writing for this publication that has been a favourite of mine in all its incarnations since Sassy? I was really moved by the positive and supportive comments I received and all the links to information that people took the trouble to post. Thank you all so much for your kindness. You have no idea how much it means to lonely old me.
I thought I would post an update about my health since so many people took the trouble to ask. I went for a trans vaginal ultrasound that I still haven’t seen the results from yet but boy fucking howdy, that hurt. The technician was very professional and warmly apologetic, she kept murmuring “so sorry, honey” as she probed my insides with what felt like a gorilla arm. “It’s a terrible, terrible disease,” she said after she finished. Her sympathy made me cry harder, and I was already bawling. It took me a while to collect myself as soon as I was able to walk again I made a beeline to a boutique across the street to soothe myself with pretend retail therapy. (This is where I browse in a store and plan purchases until I’m numb and have forgotten whatever it was that sent me into the store in the first place.)
The day after my ultrasound I had an appointment with my gynaecologist. She was, as ever, in a great hurry, but I had made a list of questions and issues I wanted addressed before I saw her and I was able to go through all of them.
The last time I saw her she had given me a prescription for Lupron, a hormone injection that tricks the body into menopause, and for other hormones I would need to take if I went for the monthly injections. I spoke to my family physician at length before I decided not to do the injections. I am prone to depression and mood swings and am in treatment for that and didn’t want to inject myself with something that would most likely affect my mood and is a treatment I wouldn’t be able to simply stop taking if it affected me adversely. An injection, once in, doesn’t come out but gradually wear off.
This time when I saw my gynaecologist she asked me if I had been treated for nerve pain. No. Not ever. Not once in the more than two years since I developed this pain. She prescribed Amitriptyline which is an anti-depressant that also works on nerve pain. She advised me to try it for a few weeks to see if it helped and if it does, to increase the dose every two weeks until I’m at a maximum dose. I double checked the drug with my pharmacist and psychiatrist before taking it to make sure it wasn’t contraindicated with any of my other medications. I haven’t taken an anti-depressant for any reason in a while so I’m curious to see if or how it influences my mood.
Then we talked about what to do if the medication doesn’t work. If I take it for two weeks and see no improvement in my pain, I’m to stop taking it. Then I’m going to try the Lupron while being monitored closely by my GP and psychiatrist. If the Lupron works and the pain decreases, then it’s very likely a hysterectomy, which is what the Lupron mimics by emulating menopause, would put a stop to endometriosis.
Even though I have a child and don’t plan on having any more, I am more than attached to my uterus and don’t want to have such a vital part of my body removed. The idea frightens me. I know it’s a measure that’s worked for lots of women so I will probably do it if nothing else works. My gynaecologist did, at some point, discuss using a Mirena IUD so I would try that before a hysterectomy. So while I do have some options lined up, they’re rather grim. Please cross your fingers for me that the new drug works and I don’t need to have my lady parts chopped out.
Once every few months I feel well enough to go to a department store with my partner. I rarely feel well enough to visit a mall but when I do I get quickly overwhelmed. I do most of my shopping online because, retail therapy. That’s a whole post in itself. Anyway, I used to get pissed off when I went to shops because I would see pretty clothes and be forced to acknowledge I spend most of my life wearing pyjamas and it made no kind of sense for me to buy a cute dress or nice jeans because I would never wear them. This would send me into a tailspin of feeling sorry for myself over, in no particular order: feeling sexless and unattractive, being jealous of people who got to dress up in nice clothes and go outside and interact with people, lamenting the waste of money that is my wardrobe full of pieces that don’t fit me and I won’t ever wear because I never go anywhere, hating my body that made me sick. The small pleasure of being able to go to a store would be overridden by the spiral of self-pity that would hit me once I got there.
Then I hit on the idea of not feeling sorry for myself. It’s still new and I’m still working through it. I realize it’s a privilege to be able to buy any kind of new clothing, so shut up, self. Then there was this idea: there’s no point in my buying new clothes but there’s every point in my having a wardrobe of pyjamas. Carrying laundry up and down stairs in my house exacerbates the pain so the less I have to do, the better. So doesn’t it make sense, then, to buy myself pyjamas, and isn’t it extra nice when they’re pretty? I feel better about myself because I feel less like a slob, the small bit of variety in my wardrobe cheers me up, and lounge wear is cheaper then outdoor clothes so I can buy more! Old Navy, the Bay, the Gap, Karmaloop, Anthropologie, and Urban Outfitters all sell pj’s online, although the last three are almost prohibitively pricey. And this is how I rationalize my way to shopping even when I’m mostly bedridden.