Trigger warning and my plea to you:
I discuss suicidal ideation and the far reaching impact of living with a disabling medical condition. It’s important to discuss, in more depth, the connection between declining relational and mental health while experiencing chronic pain/illness. If you’re experiencing a mental health crisis, please dial 988 to reach the national crisis line and make sure you have a therapist! Consider psychiatric medications as well.
Remember: Going to therapy and taking medications are not evidence of a moral failing, nor does it mean you’re weak. In fact, it takes an extraordinary amount of strength and courage to grab life by the horns, plant your feet, and fight for yourself! Find your anchor today or even for just an hour at a time, and don’t. let. go. You are worthy and needed!
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I’ve been unsure where I wanted to go with this post after I laid out a 20-year saga in my last post, which will serve as a preface to current times and the worst 2.5 years of my life. I will begin getting into that in my next post. For this month however, in honor of October being Depression Awareness Month, I’m talking about mental health. One of my reflections in the last several months is how mind boggling it is to comprehend that my story is not unique! If you marinate in that for a minute, you can begin to imagine the sheer devastation experienced by chronic pain/illness sufferers.
At this point in my story, it feels important to discuss the potentiation and synergism that occur when impactful or cumulative stressors aside from physical health issues are concurrent with the daily grind of living with a chronic, progressive medical disability. This experience is made even worse when no one can name why you’re experiencing the symptoms you have and also provide effective treatment. The wake of destruction imposed upon your mental health, employment, and important relationships when your life has lit you ablaze from both ends is nothing to be trifled with! So let’s unpack this.
It’s important to raise awareness and advocate for those who are drowning under the weight of this reality, and keep in mind they may not feel safe to disclose they’re struggling and how much. As people who have been through this will tell you, not everyone is safe to talk to. Unfortunately, this degree of struggle begins to weed out who is a safe person to keep in your life and who isn’t, who can endure the heat with you and who will walk out. I believe it’s important to drop the veneer, if/when it’s safe to do so, to make it clear that healthcare providers, mentors, the “happy” people on social media, our elders, and the resilient people in our lives also have their breaking point, the same as everyone else.
Thousands of years of mental health stigma have made this hard for people to talk about, which is suffocating and isolating. It’s certainly a vulnerable position in which I’ve put myself: Publicly sharing brutal truths, especially as a healthcare provider who is supposed to present like I “have it all together.” But, I believe in the healing power of telling our stories, for ourselves and for people around us who desperately need to feel a sense of communion with people who understand.
In service of dropping the veneer, I’ll start with some clinical data–cold, hard facts. Here’s depression and chronic pain by the numbers. These stats allow the gravity of this potentially deadly combination to really sink in. A summary of data from various studies indicates 18-50% of chronic pain sufferers are also suffering with suicidal ideation. Approximately 4-14% of individuals suffering with those thoughts attempt suicide. Chronic pain sufferers are 2x more at risk of dying by suicide than people without chronic pain. In the USA, one study in 2019 suggested that about 8.8% of all suicides were due to chronic pain. To make this percentage more understandable, in 2019 the USA had a population of about 328,239,523. Let’s do the math: 8.8% of the total population in 2019 means that chronic pain killed roughly 28,885,078 USA residents that year.
It’s sobering to know that it’s not at all uncommon for people, cisgender women in particular, to struggle for a decade or more before they get the help they need from the medical system! That stat knocks the air out of my lungs and a deep sense of bewilderment washes over me–because I’ve lived that story. It’s simultaneously horrific and comforting to know that, millions of times over, people know exactly what I’ve been through. It’s truly crazy-making to live that way and categorically unacceptable to be failed so regularly by systems that are supposed to be helping!
The trauma of living with a chronic medical condition is enough to contend with on its own. Then you add in abandonment, judgment, medical gaslighting, and life stressors on top of that. And suddenly you find yourself trying to survive a radically dangerous crisis. Often, you also have no way of knowing how long it will take to get relief, which adds to the torture and precariousness of it all. I spent 6 years living this way, in my most disabled state, and over 20 years in total from the time I should’ve started getting a diagnosis and effective treatment for at least 1 of my disorders.
At the end of my last post, I mentioned that 2023 kicked my butt. That’s frankly the understatement of the year! I was dealing with a multitude of moderate to severe stressors, in addition to my physical health crisis. Although my mental health had been in a downward spiral for years, because of my progressively worsening pelvic and abdominal pain (no matter what I tried), I really started to decline by Spring 2022. That scary turn for the worse prompted me to get a new therapist, since I’d been without one for several months. My depression by the end of 2022 was a screaming siren that I tried to keep to myself as much as possible. I had plenty of days where I managed to be positive and plenty of moments, big and small, where I felt joy. The depth of physical pain and despair made those days hard to hold onto.
All the way through 2022, only one person knew about my scary thoughts, but that person was (by intention) unaware of their frequency and severity. It felt like an emotional and relational tight rope walk. I didn’t want to suffer alone, but I also didn’t want to overwhelm or scare anyone. So I tried to walk the delicate line between disclosure and wrestling quietly with unspeakable emotional and physical pain. I was also working my agency job plus building my teeny tiny private practice on the side. My body could barely work 1 job, but I really needed the extra income to pay for medical bills.
But there’s something else I’ve come to realize (quite emotionally) in Spring this year–2.5 years after starting my practice. Starting and maintaining my private practice is a double-edged sword. Being so busy was/is dangerous because of risking burnout and exhaustion. However, it was an anchor (initially an unconscious one) at a time when my suicidal thoughts were gradually taking over. I feel a deeply spiritual connection to my private practice client work because I get to focus on my calling and love the autonomy it provides.
It may sound odd, but when all else was failing to keep me grounded, the thought of abandoning my private practice clients was life-saving, literally! I believe that on a completely unconscious level in October 2021, my brain grasped onto starting a practice not just for additional income, which was the only reason I was consciously aware of at the time. I believe my unconscious mind in fact knew I was running out of reasons to keep living, so I needed an extra anchor on my really bad days. I continued to use that as an anchor very consciously when I became aware of that benefit in Summer 2023. I mean…. Ouch! Right?
I want others to hold tight to what I knew then and still know: It truly. doesn’t. matter. what is keeping you alive in any given moment. Run. with. that. as far as it’ll carry you and then search avidly for the next best thing when you start to run out of gas. Keep your spirit’s coals hot and fight every minute until you’re fully alive and burning brighter than ever.
Cruelly and unfortunately, depression often causes us to withdraw in our time of greatest need for connection. It’s vital to resist the urge to isolate and make sure you have at least one trustworthy person who can help reel you back into yourself as needed. I had such a difficult time with this, which is really dumb of me as a seasoned therapist. BUT it goes to show how vulnerable this is! I lightly touched on this pain for the first time with 2 friends in 2023, without disclosing the true horror of how bad I really felt. The person I had been trusting with mentions of it became unsafe to talk to due to their own struggles. I viscerally faced how much danger I was in. I needed to take a leap of faith, start talking about it, and expand my support system.
While I broached that subject superficially with those 2 friends first, stupidly I didn’t say one damn word to my therapist–the one I started seeing in Spring 2022–until July 2023. How fucking wild is that?! I knew unconsciously my therapist would urge me to say more than I was ready to. I also felt ashamed and struggled with the idea of having that documented in my medical record–which is also supremely nonsensical, but that’s the honest truth. When I finally told her, she became the only person, in my entire life up until that point and also for nearly another year after that, who knew the brutal truth.
It was at this time as well that I decided to fill out the adult PTSD screening tool (the PCL5) at home one day, to better understand the impact of my medical trauma. The screening was overwhelmingly positive for PTSD, which was not surprising, but also felt very heavy for me to face. I began living chronically with suicidal thoughts, in varying degrees of intensity, more days than not. This made my PTSD that much worse because willing yourself to live that often is traumatizing AF.
But I made it! I’m 41 years old now. My life now is both an immense, seemingly bottomless well of gratitude… and an anxiety- and depression-laden slog. I have around 18 amazing healthcare providers (give or take), from numerous disciplines, who carry me in every aspect of my life. Yaaasss, finally! In. no. way. do I have proper words to express the depths of my gratitude and the acute awareness of my privilege. At the same time, devastating interpersonal losses continue to accumulate, clear through this month. I’m able to show up for about 50-60% of my work schedule in a given week, as I make space for rest and 10-17 healthcare visits every month.
You have to learn to soak up the goodness in the midst of the muck. That’s one of the hardest lessons for me to retain, but I fight for it and usually win that fight most days now. The suicidal thoughts have vanished, in spite of the immense grief swirling inside of me as a result of my interpersonal losses. I have a very large lotus flower tattooed on my back and my business logo is also a lotus. Lotus flowers are phenomenally beautiful and prolific…and they grow inside swamps. Let them coexist! One doesn’t negate the other.
I would say the 3 most enduring parts of my personality are empathy, resilience, and perseverance. My pain for a while was chronically at least 4 out of 10, the vast majority of the time. During my pain flares my pain was usually 7 to 9 out of 10! At least 1x and up to 3x per year, for 3 consecutive years, the pain would be so untenable that it forced me into the ER–one of those times, no joke, after simply doing some damn yoga in my living room. The extreme, progressive pain and disability endometriosis and adenomyosis caused from August 2018 to April 2024 nearly snuffed out 2 of my most enduring personality traits—resilience and perseverance. It truly felt like an internal act of civil war to maintain hope and keep fighting to find the root cause of my pain and also effective treatment.
If you’re profoundly struggling, you know that hope isn’t the sweet, dainty, rainbow-filled trope she’s made out to be. She is gritty, drenched in sweat, gassed, elemental, and full of war. Her appearance is mangled and aggressively demanding of your undivided attention. She doesn’t speak; she only growls. She orders you to dig deep and will yourself into the next day. If you encounter her unmasked, you’ll take very little for granted, ever again. BUT, hold tight to that lesson, especially because the climb out of hell is not always sugar and spice and everything nice. Fuel yourself with gratitude for each breath you almost couldn’t or nearly chose not to take (depending on the nature of your medical condition and mental health).
I absolutely detest the need to emergency manufacture enough resilience and executive functioning to get through each day, somewhat intact. “But look how strong you are” doesn’t feel as validating as it once did a decade ago. But the sole genetic inheritance I value from my bio family is this: So far I seem to be built like a dandelion—Life keeps mowing me down, and I keep coming back. I do worry sometimes I’ll be fully uprooted and not able to recover. But when that worry creeps in, I promptly push it out and don’t concern myself with it.
I continually refocus my mind and energy on crafting a life that will cease doing this to me in the future. You get one life and one body. Use them well! I’ve wasted far too much of both of those resources. That is an intergenerational pattern I’m laser-focused on breaking in this decade of my life. I’m grateful for this gift of relative health (there are other struggles, but they’re more manageable), so I can focus on doing just that. It’s a very imperfect journey. And that’s ok!
To end this chapter more positively, my takeaways from that time are an ever deepening awareness of and appreciation for folks struggling with disabilities, plus gratitude for how far I’ve come. I’ve often thought about and marveled in the resilience and resourcefulness of single parents who do not have my privileges. As someone who values empathy, self-reflection, awareness of my privileges, and striving to revel in even the smallest of successes and happy moments, these feel like things I can really sink my teeth into. Hell! I’ll take what I can get!
Here’s what I hope you take away from this post. Having an involved, dedicated, resourceful, knowledgeable, empathetic, and accepting community is one of the most important protective factors, if not the #1 most effective, against dying by suicide. Seek social support, get professional help, and fight like hell; that can’t be overstated! I’m laughing wryly as I tell you this: Don’t be like me! Take a deep breath and say something to someone you can trust! I discovered that being brutally honest with my therapist about how horrifying my state of mind was gave me some breathing room, which I desperately needed.
The existential realities of every chronic illness are remarkably similar. I hope that, for at least one person out there, telling my story feels like a forehead-to-forehead meditative communion with someone who gets it.
Pause and breathe with me. Hang on, my friend! You’re worth it, every last ounce. ♡