So this post has been one that has been a long time coming and I was hesitant to share it previously because I too worried about the negative stigma that comes with being labeled as “mentally ill”.
I have struggled with a suffocating and all encompassing mental illness known as Obsessive Compulsive Disorder or OCD since I was probably about 5 years old and I am finally ready to share my story about how I live with, manage, and ultimately thrive while having a mental illness.
The reason I wanted to write this post is to show that there is nothing wrong with having a mental illness or going to therapy or take an SSRI to cope with this issue or other mental health issues you might suffer from. There is such a huge negative stigma about being labeled as “mentally ill” and that diagnosis can really define you if you let it, it can take over your life.
Or you can just allow it to be one portion of your life that you refuse to let define you and you learn how to treat it and cope with it like I have done.
I’ll tell you a little bit about my history and how I came to be diagnosed and ultimately treated for OCD and then talk about how this negative stigma of mental illness continues to prevail in society and how I hope to help change that perception.
Let’s Start from the Beginning of My Mental Health Journey
I have had anxiety for as long as I can remember.
It’s not your normal anxiety that people describe when they say “I have an anxiety disorder” but anxiety that stems from being very young and feeling totally out of control of the world around you.
Imagine being a child and living in constant fear that everybody you love is going to die and you are going to be left all alone.
That’s how I felt from the age of 5 onwards and that fear shaped my whole journey into the world of mental illness and being diagnosed with OCD.
My sister had been pretty ill since the day she was born and a lot of my early childhood memories revolve around her being taken to the children’s hospital and my mom crying. I remember getting presents from parents like a nice doll or another new toy to try and make up my mom being gone for weeks at a time in children’s hospital with my sister and it just being me and my dad for a while at home.
My dad quickly became my best friend, I don’t remember the first time he’d been diagnosed with cancer but I do remember the second time, I remember going with him to supercuts so they could shave his head before chemo would take away his thick dark brown hair.
That was horrible and I felt myself losing control of my life, of my best friend and I didn’t know how to cope. That’s the first time I remember engaging in a ritualistic behavior at night when I brushed my teeth, I had to count to a certain number I deemed “safe” and after I reached that number I would go to bed knowing that my family was safe because of that ritual I just performed.
Unless you have OCD you won’t be able to relate to that part too much.
I didn’t know why I started doing that, it gave me some small semblance of feeling like I was in control of my life somehow.
Luckily my dad recovered but even then you still have those dreaded six month checkups waiting with baited breath to see if anything else came back and around that time my rituals would ramp up a bit more.
Another big bump in the road that I’ll never be able to forget is when I was in 3rd grade and my dad showed up in my classroom to pick me up early, which was strange because it was always my mom who did this. He said to me “mom fainted and she’s at the doctors”, I didn’t know what was wrong but I do remember it happened a few more times and it scared me to death, I thought I was going to lose my mom now too.
I took this all as a sign that I needed to ramp up my rituals because obviously my protective rituals weren’t enough to keep them safe, I had to do more.
I started middle school with an extreme sense of fear and my OCD quickly spiraled out of control and my eating disorder kind of took hold as well (another coping mechanism) and I took pride in not eating my lunch everyday, it was another way of trying to control a life I felt totally out of control over.
I started calling my mom fifty times a day from the school pay phone checking to make sure she was still alive and hadn’t been hurt or fainted or in a car accident or fallen down the stairs and broken her neck, all of these images that flashed through my mind 24/7 about the bad things that could happen to everybody I loved.
Those fears drove me to my ritualistic behaviors as a coping mechanism hence my OCD was in full force.
It was relentless and the rituals I used to try and cope took over my life. I was miserable and a prisoner in my own head, suffering all day every day.
The straw that really broke the camel’s back I like to say was when I had the violin teacher who put a fear in my mind that took hold and didn’t let go. My dad had started traveling to China on business trips and I told her one day at our lesson time that he was on his way to China and she said “I hope you guys have good life insurance on him because planes go down all the time on the way to China, the airlines aren’t safe”. I became riddled with an overwhelming sense of doom and panic.
Obviously I didn’t have the ability to reason this most likely wasn’t true at the time and instead I freaked out and when my dad would be on a flight to China I stayed up all night furiously checking the internet for reports of a plane crash. I created a series of rituals and habits I had to repeat incessantly until he came home safe. It sounds completely insane to somebody without OCD but if you suffer from this unrelenting illness you realize how your brain justifies it as making sense, and I was only 13.
It gave me a feeling of control over my life even though it felt like it was rapidly spiraling out of control.
When my dad returned home from that trip totally fine and told me he’s have to go back again the following month I just about lost it and broke down, I couldn’t live like this in a constant state of fear every time he made the trip and things got even worse, I started walking weird making sure not to step on certain leaves or cracks, and I started writing strangely and needing to retrace certain letters, I could hardly read a book because I needed to re read certain lines a certain number of times until it felt right. It was horrible and it took over my life.
My parents could see this and became very concerned. I needed to ultimately be pulled out of school for a few months until I could be taken to see a therapist and ultimately a psychiatrist who gave me an SSRI to try to see if it would help.
Within four weeks of taking an SSRI my OCD became manageable, I was finally able to take a deep breath and just exhale the worries and fears I had been carrying around for so long and holding onto so tightly. It was as if the vice grip around my brain had been released. I was that calm and happy kid that I used to be before all of this started. My parents thought I was “cured” and told me I didn’t need to go to therapy anymore, which I seriously regret because there is no cure for OCD and I needed to be taught how to cope with my OCD when medication simply didn’t quiet my mind.
Now looking back I wish more than anything I would have stuck with therapy rather than have to learn all of these techniques later on I could have learned younger but hind sight is 20/20 and I was just a kid who didn’t want to be “weird” I was so embarrassed I was dealing with this issue that I had never heard about before or seen before on tv or from family or friends. I didn’t want to be a social outcast, I just wanted to be normal like every other kid.
I am in no way saying an SSRI will cure your condition I just know it helped me to cope and calm the relentless rumination and worrisome thoughts in my head that were preventing me from being able to function.
I realized though as I got older that medication is in no way a total cure all because in times of stress it is easy for me to go back to OCD ritualistic behavior to cope so I needed to do something else to cope so I saw therapists and learned about EFT and CBT, two different types of therapy.
The most common kind for the treatment of OCD is Cognitive Behavioral Modification and its goal is to change patterns of thinking or behavior that are behind people’s difficulties, and so you change the way they feel.
I learned good coping techniques and also read all of the books they recommended to me about coping with OCD, some more helpful than others but one that really resonated with me was Brain Lock which shows how patients use cognitive self-therapy and behavior modification to develop new patterns of response to their obsessions. In essence, they use the mind to fix the brain. It really inspired me to keep going with CBT and also try some new techniques I hadn’t heard of before to try and manage my OCD.
Where I am Now
Today at the age of 26, I continue to function and I would say thrive while still having OCD play an everyday part in my life. I still consciously have to make the decision everyday to practice what I learned in CBT and not engage in comforting rituals or habits. It is very managable today though today because I do work so hard to handle it and I am able to live with mostly minimal OCD.
However in times of stress it’s easy for my OCD to rear it’s ugly head and make me feel like I need to slip back into those rituals to bring some sense of order and control to my life, but now after everything I have learned I know that those rituals do me no good. They only harm me emotionally and take time away from doing things that could be productive quite honestly.
If I feel the lure of an OCD ritual I flip the script and practice positive affirmations and self talk, which sounds a bit “woo woo” to some, but it helps me, I sit down and say “Harriet that isn’t going to help you with anything it’s just going to make you more stressed out and miserable in the long term, resist the urge to do (insert ritual here) and go for a walk instead of go work on your business”. Through that re direct I can force myself to switch gears and not engage in that OCD behavior, breaking the pattern and helping to retrain my brain to not feel the urge to do those things anymore.
It is hard work, some of the hardest work I’ve ever had to do in may life but it’s worth it, because I am no longer a slave to my own brain and thoughts. Something that really resonated with me I saw on social media the other day was “to anyone suffering from mental illness you are one badass mother fucker because noting is more terrifying that battling with your own ind every single day”. That is one of most accurate statements I have ever heard.
When my OCD flared up really badly earlier this year while I was going through some of the most stressful stuff I’ve ever dealt with in my life I realized I needed to take a step back from the toxic people in my life and understand that things like lack of sleep, drinking alcohol and not eating well were really taking a tole on my well being and ultimately mental health. So I worked relentlessly to clean up all areas of my life because ultimately if you don’t have your mental health and well being you don’t have anything.
Why the Negative Stigma Surrounding Mental Illness
It’s no secret that there is a veil of shame surrounding the topic of mental illness. The negative stigma surrounding mental illness is prevalent in all aspects of society but why?
Mental Health issues affect 1 in 5 Americans but less than 25% of those who suffer feel that they receive any type of understanding and compassion for their illness from others. Well think about it, from a young age kids start to refer to each other as “weird” or “crazy” and these negative stereotypes that involve labeling people continue well into adulthood.
This all stems from one thing. Fear.
Fear has driven severe discrimination and negative labeling in the mental health world for hundreds of years and the negative affects this fear has on those who actually deal with mental health issues is traumatic.
Since the 1700’s mental illness has been treated as a character flaw, a lack of willpower and strength. Exorcism’s and lobotomies used to be used to “treat” mental illness back in the day. Talking about mental health issues has really only been somewhat of a recent trend but we still have so much more we can do to work to de stigmatize mental illness.
There is a commonly held misperception that people with mental illness are dangerous and it’s fueled by media reports labeling all white men who have committed any type of heinous crime like a school shooting as being “mentally ill” without really deep diving into the broad spectrum of mental illness. Obviously those people are extreme cases, but it’s a form of stereotyping. It’s like saying all white people are KKK members or all Muslims are part of ISIS, it’s just bullshit propaganda quite honestly meant to disconnect those suffering from mental with others.
This bias that is so pervasive in society isn’t just limited to everyday social interactions either, it persists and permeates it’s way into our healthcare system so that if somebody like myself comes into a doctors office comparing of pain, if a doctor sees on your chart you take say prozac for anxiety, OCD or depression, they are much more likely to dismiss your pain as health anxiety or a manifestation of your psychological condition.
It’s the reason patients with mental illness have to fight every day for health care professionals to take their pain and suffering seriously and it is exhausting. These negative attitudes and beliefs held by society oftentimes manifest as social distancing in terms of how others interact or associate with people who are mentally ill.
People seem to have this fear that mental illness is “contagious” or “dangerous”, which is so far from the truth and all it ultimately does it prevent others from wanting to seek treatment for fear of becoming labeled as a social outcast.
“So many people with mental health issues will recognize this societal stigma and internalize it to the point where they develop a strong self stigma that works to undermine self efficacy resulting in an attitude of “why seek help or try to get better if people are just going to label me nuts?”
Further, as people begin to experience symptoms of their mental health conditions such as anxiety, depression, or OCD, stigma may cause some people to try to avoid, separate from or suppress these feelings, all of which have been linked to the worsening of these conditions and overall mental health. I yearn for the day when we can openly discuss our mental health with friends and family members in public without having to use hushed tones of shame and secrecy, if we can pick up the phone and say to your boss “yeah my depression is really bad today I can’t make it into the office I’m going to see my therapist” and it’s met with compassion and understanding“. source
I never wanted to be labeled as a kid, as you know children react to things they don’t understand with cruelty a lot of the time and I didn’t want people to know about my battle with OCD. I was deeply ashamed and truly saw it as being a character flaw. Also the way that mental illness diagnosis are so inaccurately and openly thrown around in casual conversation these days like “omg I can’t have my clothes not match I’m SO OCD” or “stop being so bipolar you’re being nuts”. It minimizes what people who do actually suffer from serious and life changing mental health issues actually go through every single day.
How We Can Change the Conversation Surrounding Mental Illness
1. Get Loud and Talk Openly about Mental Health– Changing the negative attitude surrounding mental health starts by encouraging more people to talk about it openly. Unless we help people to realize that they aren’t the only ones suffering from mental health issues they won’t seek the medical support they need and support is a key component for recovery. If mental health issues aren’t treated they can cause people to withdraw from society, abuse drugs and alcohol, lead to a loss of employment, productivity and so much more. At their worst they can be a major player in suicide, which is the 10th leading cause of death in the U.S.
2. Work to Educated Yourself and Others- Share your story about dealing with mental health issues, talk about people you know who have bravely worked to address their mental health head ons Ultimately, it’s more than just changing hearts or minds ― it’s about getting to the root of the problem by fixing systemic issues. That means more mental health training for first responders, more policies that help people with mental illness get the care they need from medical professionals and more workplace acceptance and initiatives that support individuals dealing with a psychological issue.
3. Encourage Equality Between Physical And Mental Illness– This is a big hot button topic for me because I used to wish so badly that my OCD was visible and widely acknowledged and taken seriously. Just because I looked normal and fine, I wasn’t.
I was battling with my own thoughts and brain every second of every day and it was the most excruciating exhausting thing ever. That is how people dealing with mental illness feel, they feel invisible because on the outside they look totally normal most of the time. I almost wished that my OCD would appear with a sign on my forehead or chest just saying “I’m struggling please help me” so others could see and recognize my pain.
People with physical illnesses are taken seriously most of the time and given love and compassion and that’s just not as true for those suffering from a mental illness. So if somebody you love comes to you and says “I am struggling with depression”, give it the same urgency and attention you would if they had said “I think I broke my ankle”, because both are pretty darn painful and deserve love and understanding.
4. Show People that Seeking Treatments Shows Strength – I am so incredibly grateful to celebrities that openly talk about their struggles with mental illness because there is something so compelling and inspiring about when a public figure talks about seeking treatment and taking time to work on their mental health. Demi Lovato for example who has been open and honest about her struggle with Bipolar Disorder or Logic, the amazing rapper who wrote a song 1-800-273-8255 which is the number for the suicide hotline and he’s openly shared his own mental health struggle.
I wanted to be real and honest with you guys because quite frankly following bloggers sometimes makes me feel bad about myself. My life isn’t all private planes and beach vacations or skincare regimens and tricks to get rid of cellulite, life is hard sometimes and sharing our struggles openly helps to make talking about mental health more mainstream.
If you or somebody you love is struggling with mental illness don’t be ashamed. Seek treatment and understand that you can live a very wonderful life regardless of your mental health issues.
Start the conversation about mental illness today to help work to de stigmatize it in society and encourage others to seek help and treatment.
You don’t have to suffer alone and there is hope. Sending love and light to all of my other mental health warriors out there, you guys really are the toughest group of mother f*ckers I know.