Strong Can Go Wrong, Especially in Chronic Illness

I often feel like a walking oxymoron. I teach people about communication, yet don’t always do a great job communicating effectively. Even though I talk about improving relationships, I tend to avoid working on my own. Perhaps one of the biggest issues, though, is that despite living in chronic pain for the vast majority of my life, I struggle to tell people about my pain.

Growing up in an abusive home, I quickly learned that I wasn’t expected to be my own person. Instead, I was expected to provide comfort and solace for others. That has affected every single day of my life thus far and, despite all the work I’ve done to grow, will probably be a factor until the day I die. It’s caused fights, even with how much I know I can and should share.

It isn’t just that I struggle to show my weak points to others… although, it’s naturally hard to be that vulnerable with others. For me, though, it runs into the conditioning I grew up with, and that’s a hard series of indoctrinations that’s not easy to move past.

Even though I’ve made a name for myself by sharing things with random strangers on the internet – hi! – I still would rather listen to others than talk. Hell, I literally work for an organization where I problem-solve for fellow disabled and chronically ill people and help them feel heard.

At home, I listen to every noise our guinea pigs make. We completely get each other, and I know when they’re asking for snacks. When they get frustrated or annoyed, I can tell and change things up accordingly.

My husband is… another story.

A decade ago, we sat in his car listening to music. He told me how he wanted to be here for me – to share in the burden of my illnesses. For such a long time, I was used to fighting things alone and that was taking its toll on our relationship.

The problem is that we’re both listeners. When we hurt, we both turn inward and crave isolation over interacting with others. I tend to do this with physical pain or when I’m dealing with a Post-Traumatic Stress episode. I may not always be in the best headspace, but it’s usually something that passes quickly.

TJ’s major depression doesn’t operate like that.

In recent years, he’s been able to start sharing more about what he’s facing. Often, though, I have to pull information out like dentists pull teeth. Each nugget of information sits there waiting for these invisible verbal pliers that, combined with reassuring snuggles, finally get the job done.

Every time his depression gets worse, so does my physical pain. Naturally, I haven’t shared that with him because it would be easy to use that as an excuse to avoid sharing… well, it could be if TJ was married to someone who couldn’t read him well.

When TJ shares things with me freely and openly, it changes the dynamics of our relationship. We stop being two people trying to protect each other by denying what we’re each facing. Instead, like adults, we accept each other’s illnesses and try to help where we can.

If that’s not the best reason to be more forthcoming with our own personal struggles, I don’t know what is.

Make sure to check out Lene’s piece, When Strong Gets In The Way. If you missed our Facebook Live, you can always watch it below:

Allowing Ourselves to Feel Our Feelings

A few years ago – when I was still doing talk therapy – I brought T with me a couple of times. I felt like there was tension we needed to talk out, and I was right. It just wasn’t the tension I was expecting.

TW for abuse, shitty parenting, emotional incest, self-harm

dark blue background with teal bubbles and white text: Allowing Ourselves to Feel Our Feelings - and teal text: Chronic Sex; on right, photo of a white person covering their mouth

Growing up, I’ve always been that person who tries to cheer everyone up. It’s a habit that developed early in life. Living between two combative abusers, I learned very quickly that they were less likely to cause harm if they were happy. Naturally, then, anytime they were sad or upset, I would do my darnedest to cheer them up.

It’s a large part of why I’m such a sticker around rules, too. If rules are followed, rule-makers don’t harm us, right? (Of course, the political activist in me shudders at that sentence and wants to vomit, but it is what it is I guess?)

Of course, that also meant hiding a lot of my own feelings for the ‘benefit’ of others. For a long time, I had two moods – happy and brooding. When I was happy, I would dance to the latest radio pop and hip-hop songs. When I wasn’t, I listened to a lot of Linkin Park and the beginnings of screamo.

It’s hard to find healthy coping mechanisms in a space full of harm. When I got out and away from my family, I still had to deal with a lot of abuse. It wasn’t until four years ago when I cut contact with my mother that I actually was able to start healing.

The euphoria of that separation, of cutting off codependency and emotional incest, combined with getting married was something I was able to ride for a long time. As they always do, though, that high wore off. I began to realize that I wasn’t as healed as I thought. That’s when I started therapy which helped for a little while.

Continue reading “Allowing Ourselves to Feel Our Feelings”

SSC is Ableist – Let’s Use RACK Instead

TW saneism, ableism

photo of a long haired person looking away from the camera with black text: SSC is Ableist - Let's Use RACK Instead and Chronic Sex

There is one well-known tenet in the BDSM and kink world – all parties must give consent. That said, there are a few different ideas around that consent. Two ways of talking about it are SSC and RACK. Today, we’re gonna look at both.

Definitions

Safe, Sane, Consensual (SSC)

SSC is a long-standing term within kink communities. It means that acts should be safe, agreed to under a ‘sane’ frame of mind, and obviously should be consensual. The term came about in the early 1980s from the S&M scene’s David Stein.

Risk-Aware Consensual Kink

This term from the late 1990s came from Gary Switch who wanted to have a more fitting acronym for kink play. The idea of replacing safe with risk-aware acknowledges that safety is almost never ensured in anything we do. Instead, we should be aware of the risks before engaging in an activity. This is also why I’ve started to call ‘safe’ sex risk-aware sex instead. It’s just more accurate.

Other terms you might see:

  • Committed, Compassionate, Consensual (CCC)
  • Personal Responsibility, Informed Consensual Kink (PRICK)
  • Communities may also have their own terms

Each of these alternate terms remove some of the stigma SSC was meant to fight without making false claims about safety. They also remove the ableist component present in SSC.

SSC is Ableist

I’m not sane. My depression, anxiety, and PTSD ensure that. There is no condition I will ever be in that makes me sane in body or mind. As someone who engages in kink to help my chronic pain and PTSD, I need a community that uses a more accurate and compassionate term.

I hesitate to think who I would be without my chronic pain or mental health issues. What I can say is I’d likely not be involved in kink. I’m definitely not alone in that.

We’ve all grown so much since SSC came about. Hell, I wasn’t even born! We should be growing the terms we use for our communities, too. In an age where we’re focused on highlighting marginalized voices, can we really afford alienating some because we don’t want to use a new term? I don’t think so.

Telling Me To Reach Out Is Condescending

TW for suicide, mental health struggles, abuse

With recent high-profile suicides, people are talking about being a beacon to reach out to. While I know they mean well, the reality is that doesn’t necessarily mean they’ll save lives. In fact, for some of us, it feels unintentionally condescending.

This goes double if you’re posting voice numbers for suicide hotlines. Please make sure that, if you’re going to post that info, you’re including text crisis and TTY lines, too.

I’ve been mentally ill for nearly three decades now. It took me way too long to figure out the patterns in my own life. From November to April, my depression is bad. I’ll have days here and there that are great, but the bulk of it is hard. I’m sure it doesn’t help that my physical issues ramp up then, too.

When someone tells me I can reach out to them, it’s a nice gesture. However, it doesn’t address the parts of me that constantly feel like I’m a burden. It doesn’t help me actually feel comfortable reaching out, even to the closest of friends or family.

What I really need is for those beacons of permission to reach out to me, to check in on me.

That’s not easy, especially since I have phone anxiety. When any kind of anxiety and depression get together, it can make it nearly impossible to reach out. The two work together – sometimes with my PTSD – to remind me of all the things I’ve said and done that were harmful to others. This horrible trio reminds me that I have to keep quiet, that telling others what I’m going through isn’t okay.

My history of abuse and neglect – and being threatened to stay quiet – tell me I can’t speak.

I know I’m not alone in this. Many of us have been through horrible things that we can’t talk about to everyday people. No one wants to hear about the whippings, being locked in rooms, or other things.

What to do instead

If you want someone to feel comfortable speaking to you about struggling, there are so many ways of showing it.

  • Reaching out on social media if you see we’re having a rough time
  • Developing a close relationship
  • Sending us funny stories
  • Texting us silly videos
  • Be accountability partners
  • Check in on us

Those are just a few ideas. They won’t work for every single person.

If you want to make a difference to more people, consider helping us fight for a better mental health care system or to keep the ACA. Join us when we sign petitions or protest, putting our bodies on the line. Show up for us in more ways than just the intimately personal ones.

Because honestly? The best way to help me with my mental health is to help me fight the shit coming down the pipeline.

I Changed in November 2016 – And That’s Okay

photo of a person wearing jeans from legs down against a mountain backdrop with white text: " I Changed in November 2016 " and pink text " And That's Okay "

In the mornings, I go through and schedule social media posts. It isn’t every morning anymore – more like every couple – but it’s still a habit. It helps with gathering stuff up for LUOF, here, and more.

I had a lot on my mind this morning when I went to schedule. When I came across this piece, it really hit home.

https://thebodyisnotanapology.com/magazine/its-okay-to-change-after-a-difficult-thing-has-happened/

I’ve changed since the 2016 presidential election. I had to.

Right before the election, I came out about my gender and sexuality. I was so confident in myself and that things were changing for the better that I got cocky about showing the world more of my authentic self.

Some of the changes before the election were forced ones on my part. I wanted people to see me the same way they saw other patients or sex educators. I wanted my dad and his family to like me. It was clear to me that people didn’t want someone fighting for justice – they wanted someone who never got angry.

That whole time I tried to be chill and go with the flow for everyone else, I was struggling. My pain was so bad (not that it’s ever great). I felt like I had to become someone else to make others comfortable, just like I had done for my mother my whole life. Instead of being myself, I was hiding for the benefits of others.

The election

I spent the night of the election in bed, sobbing uncontrollably. Being a genderfluid/trans, pan/queer, disabled, abuse surviving sex educator – and being out about all of it – scared me. I wasn’t scared because of people I knew – yet – but those like You-Know-Who that refused to see me as a human being.

Then, of course, I learned about the views of people I thought I knew – that I thought were my friends. Instead of kindness, love, and compassion, I was met with hostility from people I would’ve done anything for. One friend acted like their queer and trans friends needed to grow up and stop whining. A few months later when You-Know-Who started seriously shit for my communities, that person reached out to apologize. I realized I didn’t need them in my life, especially when they misgender people and then get upset people don’t cut them slack years down the line.

Others quickly grew tired of me talking about privilege and justice. In trying to educate cishet people about what the rest of us face, I was somehow being ‘exclusionary.’ By trying to use my privileges to address racism, colorism, poverty, and more, I was apparently making people with the same privileges uncomfortable.

Moving on

I feared most the things that have come to pass. It’s been a fight to not be run over by this administration. To get shit from friends for being my authentic self is hard.

This stuff all hurts. It shreds my soul like its a soft cheese. On top of that, it’s exhausting to wake up ready to fight every single day. It’s draining and rough.

This has taken nearly two years to talk about it for a reason.

There’s a great quote that I try to remember when people tell me shitty things:

“When you’re accustomed to privilege, equality feels like oppression”.

The white, middle-aged, middle-class, cishet patient advocates that get upset about me calling discrimination what it is have to learn to grow. They have to move past their privilege and into uncomfortable spaces. Instead of focusing only on advocacy for themselves and their condition(s), they need to see the benefits of activism and fighting for justice.

In the spirit of Audre Lorde, I am not free while any person is unfree, even when their shackles are very different from my own.

So, yeah, I’ve changed since the election

I have – for the better. Instead of keeping quiet about what bothers me, I speak up. I talk about being abused in the patient community and how upset it makes me that others refuse to address it. I point out when people are being bigoted or discriminatory in their views.

No one is perfect. I’m certainly not. I’m working on getting better about taking feedback. I wish I was better at it right now, but it’s a process. It’s not easy, especially when I had no foundation around handling emotions well. Of course, it doesn’t help that my depression and anxiety often manifest as anger.

As Tiffany points out in the piece above,

Getting through difficult things is by its nature – difficult. Changing is not a sign of weakness or flaw.

We shift, we change, we heal, we move on, we get stuck, we get stuck in the pursuit of moving on, we adapt, we falter… Making peace with yourself through all these journeys is so very important to loving yourself – to loving all of yourself.

Right now, I’m still working on change. And that’s okay.

Pick Up Women’s Health This Month!

If you take a look at the latest copy of Women’s Health magazine, you’ll see a familiar face around page 156.

two photo collage on a black background; 1-cover of the May 2018 issue of Women's Health with Anna Farris; 2-photo of Kirsten leaning on Theron’s shoulder in the magazine

T and I are in the magazine talking about how we make love work with depression and other mental illness. Our blurb is small, but it means so much to me.

Sometimes we forget the impact we have on others just by sharing our own stories. This was a much-needed reminder to keep telling my truth.

I picked up a couple extra copies, so let me know if you want one and I’ll be happy to send it out.

Life Effects from Slate

photo of a person underneath a white comforter with squiggly designs on it and their left arm reaching out from the comforter; behind them is a white wall; an orange text box across the top has "Life Effects from Slate" and "Chronic Sex" in white text

Back in November, I posted across social media that I was doing something super cool. I didn’t want to spill the beans, though, so I kept it under wraps.

Kirsten in a recording studio wearing a grey top and black over ear headphones; she's making a surprised face next to a microphone with buffer

Now I can share!

Slate (yes, that Slate) has a new podcast called Life Effects. Hosted by Nikki Webber Allen, this podcast talks about the experiences of people with depression. I’m on a couple episodes discussing triggers and technology’s effects on depression – good and bad.

As a heads up, during the triggers episode, I talk about or at least mention the following potential triggers: abuse, child abuse, self-harm, and the process of what it’s like to have my PTSD triggered.

Anyway, go take a listen.

 

MIAW: Let’s Talk About PTSD

on left, photo of a woman with long hair and a beige jacket standing in the rain and moving her dark hair out of her face with her left hand; on right, a grey text post with white text "MIAW:" yellow text "Let's Talk About PTSD" and white text "Chronic Sex"

Trigger warning: this article discusses Post-Traumatic Stress (PTSD). It will talk about examples of events (abuse, sexual assault, etc), triggers, and how it feels to be triggered. Practice self-care accordingly.

Post-Traumatic Stress (PTSD) is a diagnosis that can affect anyone at anytime.

The average person probably thinks of a military veteran when conversations around PTSD pop up. However, any singular traumatic event can trigger PTSD – and so can repetitive and longer-lasting traumas such as child abuse or experiencing discrimination (i.e., racism, homomisia, etc). The latter is considered generally to be Complex PTSD (C-PTSD). Some examples of other events are experiencing/witnessing assault, natural disasters, accidents, terrorist attacks, and dealing with/being diagnosed with a serious medical condition.

Symptoms

Not everyone experiences Post-Traumatic Stress the same way. However, common symptoms include:

  • Displaced anger and fear
  • Panic/anxiety attacks
  • Low self-esteem
  • Distrust, isolation
  • Shame, guilt, self-blame
  • Depression
  • Dissociation or detachment
  • Upset stomach, bloating, gas, IBS
  • Weight gain (difficult to lose)
  • Migraines
  • Tinnitus
  • New allergies or skin conditions
  • Sleeping issues, insomnia
  • Poor memory
  • Difficulty concentrating
  • Chronic pain
  • Muscle tension
  • Change in amygdala size
  • Hypervigilance (being extremely alert, on edge)
  • Flashbacks
  • Nightmares

There is a wide variety of triggers that might trigger a recollection of an event. Some common ones include smells, words, and similar situations in media. When this happens, a person doesn’t just remember the event but will actually have a physiological reaction. You may feel you’re being touched or experiencing heat off of a fire that occurred in the memory.

The reactions are physiological. Not only do you remember the event and feel the way you felt, fear and similar reactions occur. It can be hard to come down from this as well.

Treatments

Therapy can be helpful for many, especially Eye Movement Desensitisation & Reprocessing (EMDR) therapy.

Medications can help as well, specifically antidepressants or anxiety medication.

Meditation and yoga can be helpful as well. Other complementary therapies like massage or acupuncture might help as well.

There is no one perfect or preferred treatment. Just like with most mental illnesses, it depends on what works best for you and your lifestyle.

What It Feels Like

The biggest reason I’m talking about PTSD for Mental Illness Awareness Week is that I have it. It’s something that is incredibly misunderstood. While I believe I’ve had this since childhood, I wasn’t diagnosed until March 17, 2015.

By June of that year, I was writing in-depth posts about the abuse I witnessed or went through. Funny enough, as I watch (or rewatch) shows and movies, I’ve noticed new things around PTSD – like how Seven of Nine on Star Trek: Voyager has PTSD – and how Captain Janeway victim blames Seven instead of really being helpful.

Like with any illness, the unpredictability and lack of control are the biggest issues. Even with trigger warnings – which are incredibly important – I’m not always in a good headspace to read things.

If you have Post-Traumatic Stress, know that you’re not alone. It’s hard to handle this condition, but learning to do self-care really helps.

Sources

Royal College of Psychiatrists, PTSD UK, personal experience

MIAW: Basic Mental Health Facts

B&W photo of a dude looking out a window; on right, a white text box with blue text "NIAW" and under this is white text "Basic Mental Health Facts" and at bottom is a white text box with blue text "Chronic Sex"

This week is Mental Illness Awareness Week. Today, I wanted to focus on sharing mental health facts.

While 26% American adults live with a mental illness, one in twenty-five has a serious mental illness. A serious mental illness is one that “results in serious functional impairment, which substantially interferes with or limits one or more major life activities.” This includes conditions like Schizophrenia, Post-Traumatic Stress (PTSD), and Bipolar Depression.

Just under 20% of American adults live with an anxiety disorder, PTSD, or phobias. This is the most common category of mental illness and can be especially common for people with complex medical histories.

Depression and anxiety are common in people living with other chronic illnesses or disabilities. This can lead to more severe symptoms in both mental and physical illnesses. Depression can also lead to higher risks of heart attack and stroke. Risk factors for both mental and non-mental chronic illness include Adverse Childhood Experiences (ACEs), poverty, isolation, lack of social interaction/support, racism, lack of access to fresh food and healthcare, and more.

Around 70% of adults with mental illness also have a non-mental chronic illness. Living with both lead to a 4x chance that you’ll die early.

Many patients with mental health issues have their medical issues taken less seriously. Sometimes this is more an issue of not having great access to care or insurance. Silos that separate mental care from medical care also add to the problem.

Having a mental illness makes you about twice as likely to be a victim of a violent crime than a perp.

In 2008, mental illness was found to be the third largest contributor to homelessness. Nearly half of all homeless people have a mental illness, and 25% have a serious mental illness.

Seventy-five percent of mental illnesses start by the time you’re in your mid-twenties.

Over half of adults who have substance use disorder also have an underlying mental health issue.

People with multiple marginalizations (i.e., people of color, women, people living in poverty, etc) are less likely to receive a concrete diagnosis or treatment. With that said, around 20% of white and black adults have a mental illness. 16% of Latinx adults, 14% of Asian adults, and nearly 30% of Native Americans or Alaskan natives struggle as well.

People within the LGBTQQIA2+ community are more than twice as likely to have a mental illness. They are 2-3 times more likely to attempt suicide in their youth. They’re also more likely to experience discrimination when seeking healthcare, especially for mental illnesses.

Some of the many barriers encountered when seeking a diagnosis or care include:

  • Access, including lack of insurance coverage for mental health
  • Timing (i.e., Can you see a provider outside of work hours?)
  • Poverty
  • Transportation
  • Quality of care
  • Stigma
  • Racism
  • Homomisia, Transmisia, Cisheterosexism, and additional discrimination
  • Language barriers

Facts from NAMI, Mental Health By The NumbersMulticultural Facts, NIAMH, CDC, SAMHSA.