On being sick

I’m sitting in the laundromat, waiting for my clothes and towels and sheets to try. I am nauseated. I have a headache. My jaw is clenching. I’m tired as fuck and I’m sad. None of this is new or even unique for a Monday. I got enough sleep, took my meds, ate regularly, stayed hydrated, limited caffeine, took computer screen breaks, and meditated today. And I still feel like shit.

This is what it’s like to be sick. I have some diagnoses, yes. But honestly, none of them fully explain the general malaise I’ve felt for most of my life. But that’s just the trouble with medical diagnoses; they are literally just clustered of symptoms and disordered happenings in your body put together by nature and process and appearance and given a word for simplicity and treatment. They are not answers and they rarely provide information that leads to a quick fix.

If I learned anything from being married to a doctor, it’s that there is a lot we do know about how bodies work and a lot we don’t know. Our bodies are complicated and we are just beginning to scratch the surface of research into how our brain’s function and manage our bodies. In the end it’s all chemical reactions, synapses firing, enzymes and proteins and hormones doing their thing. Or not. Or kind of but not how they should or how they do in most people.

My theories for why I am sick have spanned quite a range. Something about being able to point to a reason for an illness gives you some semblance of control over it, even if your theories end in the conclusion that it’s your fault - you did something to deserve it. It’s hard to shake the religious justice system when you’re raised like that and even harder to accept the true randomness and chaos of life, especially if you keep getting fucked over.

Some of the ways my brain tried to account for the pain and dysfunction I was experiencing: the headaches were just hair tied too tight for dance in my youth, the depression that set in was genetic or spurred by my parent’s divorce. The unending GI distress through high school was God punishing me for masturbating. Then there was trauma. For a while it seemed trauma could explain it all. The trauma of leaving Mormonism and losing a lot of relationships and then the trauma of repeated sexual assault. The trauma of oppressive capitalism, patriarchy and non stop societal gaslighting. Fatigue and pain and anxiety and never ending nausea, memory problems and poor response to adrenaline and cortisol. Nightmares. Nightmares… Intrusive thoughts. Suicidal ideation. Fear, agoraphobia, chronic reproductive problems/pelvic floor dysfunction. And for everything trauma doesn’t directly explain or that trauma work doesn’t seem to tough - it must be because I’m not taking good care of my body…. right? Which leads to self harm, self punishment, self denial, restriction, self flagellation, and general disdain for this body and this brain.

LIFESTYLE CHANGES have been more or less blamed or touted as the answer for virtually all of this. Eat “right”, practice sleep hygiene, meditate, exercise, no alcohol, no caffeine, no sugar, process your emotions, watch less tv, use social media less, get sunlight, track your food, track your period, track your pain, track your sleep, track your emotions, track track track.

THERAPY. I’ve been in therapy almost constantly since I was 12. CBT, EMDR, faith based shit, 12-step, alanon, “energy” work, massage, thai massage, rolfing, YOGAAAAA, physical therapy behavior modification courses, writing blogs, talking about it, group therapy, support groups, friendships, lovers, even one institutionalization.

PILLS. Take them. Don’t take them. Self medicate, trust your doctors, don’t trust western medicine, eastern medicine, ionized water, supplements, essential oils. Psychedelics, anti-depressants, IV pain killers, symptom spot treatments, narcotics, benzos, anti-emetics, NSAIDS, marijuana.

Some of what I’ve mentioned is evidence based, some of it cannot be studied and some of it we do not have an understanding of, yet. Some of it is teetering on being more harmful than helpful and some of it is definitely placebo effect (which, can we stop being down on that, it’s an actual measurable effect, so placebo effect is great).

Regardless of efficacy or science, every single thing I’ve listed has seemed like THE THING. The thing just around the corner that will finally have me feeling better. Normal. And barring perhaps religion which I think on balance did much more harm than good and perhaps wellness rhetoric (not the practices themselves) all of this has helped. I’ve had relief from some things and weeks with more good days than bad. I’ve had high periods like falling in love, which is a drug nothing else can touch. I’ve travelled and I’ve worked and gone to school and maintained relationships. I’m not just a sack of symptoms.

But the way my body and brain function or don’t function and what it feels like to be here in it and what I should do or not do to change that has taken up an astoundingly high percentage of my free energy and effort. It’s a lot of energy and sometimes I wonder if I’m any better off now than any time before? Kind of. In some ways. In others, I’m more broken. I’ve become more jaded in recent years. More likely to look at the world and my future and think more about coping than thriving. In other ways, I’m freer. Because, having tried five million things and determining they didn’t make a difference for me allows the ‘what if’ thoughts to float by. And overall I feel less personally responsible for this stuff than ever before. Though the checklist I supplied earlier in this post says differently. It’s compulsive at this point.

Like. Maybe I can just chill and stop chasing. I’ve been slowing my roll in terms of chasing a cure for a few years now, and maybe the last piece was fully rejecting diet culture (we call it “wellness” or “clean eating” eye roll). Nothing I eat or stop eating is going to save me. Neither is any pill, exercise, meditation, therapy or idea. So I’m shifting my energies full time to symptom management and bringing more pleasure, joy and meaning into my life and just accepting that I may never feel great and maybe that’s OK. It’s gonna end someday anyway and I really don’t want to spend this one life I have desperately trying to control things that I cannot.

For me, part of the way I process has always been advocacy and education. That’s why as I’ve been learning how there are real measurable harmful effects from selling wellness culture and stigmatizing marginalized folks (and the mentally ill are a marginalized group), I did a social media post with a few of the meds I take using a hashtag that’s about ending the stigma around mental health. Then a person I know from yoga messages me telling me I didn’t have to be on those meds, she had found a “better way” and was much happier. She believes in kundalini and diet based treatment based on your dosha and no doubt her solution would have been some really intense change to the way I eat and omg no fucking thanks. This could be because I’m highly irritable due to a recent med change or the fact that I’m a professionally offended person, but I went off on her and then publicly in my Instagram stories and it felt so fucking good.

I swear to god anyone trying to help chronically ill folks with any kind of wellness lifestyle, diet or program should be kicked off the internet for a year. We are a fragile bunch. Or rather, we are a tough bunch. We have suffered with little to no relief or hope and every time a well person tells us their lavender oil healed their anxiety and then tries to sell it to us, we die a little inside. I know they think they’re helping, I once did too (omg I’m embarrassed). Suffering sucks. We all would pay just about anything to feel better and that’s exactly why exploiting that particular desire is so sinister. Please don’t do it. Offer empathy, compassion, practical and emotional support, speak from personal experience, NEVER OFFER UNSOLICITED HEALTH ADVICE to a chronically ill person and if you’re in the wellness industry, you better be goddam sure you’re not falsely advertising what you can and cannot do for a chronically ill person.

So here I am, processing publicly again. Partially feeling sorry for myself and partially feeling wildly fortunate because I know that while my path is my own and it’s been tough, I’ve also had uninterrupted access to prime healthcare and the means and knowledge to seek alternative options. That, and I’ve never faced homelessness or food insecurity or lost a job due to my illnesses, and barring one brush with the law that could ultimately be dealt with and brushed under the rug with money, I’ve not been wrapped up in the criminal “justice” system and that’s all just virtue of where I was born and to whom, plus how I look.

You know, I actually feel a lot better now. Writing can be quite healing. Or maybe my kratom has just kicked in. In any case, this was perhaps a long way to say that today, I accept it. I accept this body and this brain and this life. I am here right now and that’s actually pretty fucking incredible and maybe life is not about avoiding suffering but embracing it and going on anyway. Also, if anyone wants to buy me a massage, I will always accept that kind of healthcare.