I am Jamie, a partner, a mother, sister, a daughter, and a doula as well as a blogger and podcaster and rec league basketball player. I wear many hats and that’s how I like it, always on the go! I am new to Step Up for Mental Health, and here is my story:
When Adrienne and I connected after my birthday fundraiser for Step Up For Mental Health, we bonded instantly. Two women from vastly different backgrounds yet finding ourselves bonding in the same caregiver-adjacent roles. You see, the struggle with writing this essay about my mental health journey is that the front row seat I have to OCD is that I don’t have OCD myself. I love and care for a family member who is experiencing, fighting and adapting to this challenge and because I’m not a real caregiver – because the above disorders don’t require full time caretaking maintenance – my role as a family member to someone with these challenges goes undefined. Adrienne understood this all too well, she grew up needing support and recognition that did not exist yet. She created this organization to help people like us, folks who are affected by mental health challenges indirectly.
I exist in an undefined, gray area. I am neither the identified patient nor the caretaker … I’m somewhere in the middle: a witness with limited ability to intervene, hovering around caretaker-adjacent status with no real title. I know that I am not alone because I know that there are millions of people who suffer from anxiety disorders and they have family members they love who get the same helpless feeling: a front row seat to a misunderstood condition. I also feel like I am uniquely suited to this important post thanks to a host of caretaker adjacent roles I have filled in my lifetime. Providing comfort and support is something I take pride in.
Mothers experiencing Postpartum Depression, for example, might have visions of harming themselves or their babies. The mother can feel shame for having these intrusive thoughts and yet she has no control over whether or not they’ll just pop in and give her some torture.
People battling anxiety disorders are extremely intelligent and highly functioning so they often hold all types of important high-level jobs. Some are able to masterfully hide their condition, others are open about it and transparent with their stories. The unique experience of not needing a real caretaker, but needing a VERY different kind of support than a family member who is not suffering from a challenge, is where I live. I am adjacent to the challenge and I can help sometimes but the fight is not mine.
I never thought I would be relieved to have experienced intrusive thoughts, but when a family member of mine was battling a flare-up of Obsessive Compulsive Disorder I felt like a light bulb went off and I had closure to my Postpartum experience. Finally, there was a reason for my suffering, I can now actually relate to the experience of having intrusive thoughts. Intrusive thoughts are unwanted, often disturbing and leave the person feeling confused about why that thought could have happened. Mothers experiencing Postpartum Depression, for example, might have visions of harming themselves or their babies. The mother can feel shame for having these intrusive thoughts and yet she has no control over whether or not they’ll just pop in and give her some torture. I experienced these thoughts. I felt unworthy of being a mother. The difference between my intrusive thoughts and the ones my family member experiences is: mine all went away when the postpartum cloud lifted off me one day. My family member, on the other hand, will never be rid of the intrusive thoughts. They will always reform and return.
While I have had personal experience with Situational Depression and Postpartum Depression, because they’re what they sound like, they disappear after the cause disappears. In the Situational Depressions I’ve experienced, they were all caused by profound stress in my life: losing a job; death of a loved one. Once I got a new job and once I grieved the death, my health returned and my sanity was restored. Same for Postpartum Depression, once it went away it was gone for good.
What it might look like is a 10-year-old boy who is freaking out and refusing to sit next to a family member at Thanksgiving because his OCD told him if he touches her he’ll choke on his food and die.
What is OCD?
Let me break down OCD for you. Obsessive Compulsive Disorder is a snake eating its tail, it’s an insidious demon that constantly changes form. Someone living with OCD experiences intrusive thoughts that are usually connected to a deep fear. When the intrusive thoughts come up, the person experiencing them wants it to go away. For some reason, the disorder dictates a condition that could make the thought not come true – a magical undoing of the curse. It might say “Your girlfriend won’t break up with you if all the lights are turned off seven times”. So that person is now running around flicking light switches because the fear of the thought is governing the behavior.
What you get is an endless cycle of these thoughts torturing an individual and then them performing compulsions or rituals to end the suffering. Sometimes it’s hand washing which is what most people think of when they envision what OCD is: it’s some germaphobe thing tied to cleanliness. What it might look like is a 10-year-old boy who is freaking out and refusing to sit next to a family member at Thanksgiving because his OCD told him if he touches her he’ll choke on his food and die. And he truly believes this so he’d rather piss off the family and get kicked out of dinner than risk his terrifying thought coming true.
No matter the cocktail of meds remixed, these nasty thoughts will continue to attack. When it’s in control and exposure therapy is successful and life is calm, the symptoms are easier to manage. When there’s a big life change like a move or the birth of a child, the intrusive thoughts demon leaps out at the opportunity to be terrible.
As I said though I’m uniquely prepared for this role.
My Family History
My grandmother was diagnosed with Alzheimer’s Disease when I was ten years old. She moved in with us when I was 13 and we became her full-time caretakers. This is proper use of the term caretaker because a person suffering from this condition requires constant care. My mother bore the brunt of the heavy lifting and would be up at all hours of the night saving my dad’s mom from the night terrors and night walking her anti-Alzheimer’s drugs tortured her with. Nana would fall and the blood thinning drugs she was on caused her skin to tear and bleed everywhere. All the while, day by day her caretakers: her family, the ones who she birthed and carried and cared for became strangers to her. She lived with us and didn’t know who we were or where she was. And so we coped. We coped for years like this. One time she walked out of the house and went missing and we had to canvas the neighborhood to find her. One time my high school boyfriend and I were coming back from a party and she opened the door totally naked. He turned and ran back to the car and we never spoke of it. Our house had cardboard boxes over sharp edges, baby gates restricting her access to dangerous rooms where she could fall or cut herself. Slowly we stopped having friends over. It was too difficult to explain the disease to people who had zero understanding of a brain disease. How could a person who was once normal turn into this? That question was scary to our friends, so we avoided having them over to avoid the endless explaining: We have to have the cardboard against the sharp edges or she’ll slice her hands and then smear blood on the walls … doesn’t exactly play well to a crowd of braces-wearing adolescents. Despite what you just read though I would describe our family as normal and while our circumstance wasn’t, I didn’t feel too different from my friends. And I think that’s because it was my mom who was the caretaker, so I felt more like a witness who aside from fetching random items my mom would yell for during a crisis, I felt powerless.
And here I am again feeling powerless against this nemesis OCD. I read the books, I go to the lectures, I seek out professional after professional and despite my fervor, there is no magic bullet. Once again I can just sit by and watch as my family member is tortured. Our particular brand of OCD is the most insidious kind, the “Pure O” kind. Experts will argue there is no pure O form, but I don’t mind the term myself, I think it’s the best description we have and so if they can’t give it a new distinction we’ll keep Pure O. Pure O is the kind that is just intrusive thoughts, no accompanying ritual. Our kind of OCD demon (btw the D should stand for DEMON, not disorder) evolved into this after years of mainstream OCD bored it. It was like oh ok you’ve learned how to do ERP and CBT to resist my compulsions, fine, I’ll just keep torturing you and give you no compulsions to be able to fight. ERP, CBT and DBT are our weapons against the demon btw. I’ll sum it up this way, those acronyms above all basically stand for whatever the compulsion is, DON’T feed the beast. If your OCD has you afraid of bathrooms, your therapy is gonna be to touch a dirty toilet. Once you see that the intrusive thought didn’t come true, that particular compulsion can be relieved and eliminated. Yes, that’s oversimplified but you didn’t ask a Mommy Blogger to really explain complex mental health stuff in a few sentences, did you? Anyway, what some professionals argue is that the absence of a physical compulsion doesn’t mean the sufferer isn’t performing some mental ritual or prayer ritual to relieve an obsession. Ok, that’s fine. What I see looks a lot like depression in this case. My family member sleeps a lot and becomes withdrawn. What’s happening is the sleeping and the withdrawing are an attempt to fight the demon.
So here we are fighting the good fight. Searching for and redefining normalcy.
In my perfect world, we talk about mental health all the time. It would be required coursework starting in elementary school. I would love for everyone to be educated on mental health challenges both to increase advocacy and to de-stigmatize some of these disorders. I want the sisters, brothers, husbands, wives of people who are struggling to be able to talk out loud about those specific challenges – not hide behind a smile and pretend everything is normal. I want our children to ask each other how they’re feeling and genuinely care about the answer. And, I want to encourage everyone, whether you’re feeling challenged yourself or not to step into a therapists office, even if it’s just for a tune-up, you’ll leave feeling better.
Nice to meet you, excited to be here!
Xoxo
– Jamie
