My Hypochondria Is All in Your Mind

Hypochondria all in your mind

Any person who is eventually diagnosed with a chronic illness (especially autoimmune disease) will have likely been first labelled a hypochondriac. The likelihood of that happening at least doubles if they are gendered female.

The medical profession has a long history of labelling women as emotionally labile and as unreliable reporters of their own symptoms.

HYSTERIA: A psychological disorder (not now regarded as a single definite condition) whose symptoms include conversion of psychological stress into physical symptoms (somatization), selective amnesia, shallow volatile emotions, and overdramatic or attention-seeking behavior. The term has a controversial history as it was formerly regarded as a disease specific to women. (source: Google)

For women, complaints of headaches, generalized aches and pains, and the feeling that ‘something isn’t right’ with their bodies are dismissed as somehow illegitimate, either because of the emotional state of the patients reporting them, or simply the perceived propensity towards emotion by women as a whole. Even if the symptoms are given some credence, the phrase “somatic complaints” gets thrown around: Either the complaints are fake because women are over-emotional, or they are real but are caused by women being over-emotional. It’s a double-bind dilemma from which there isn’t an easy escape: Either way, genuine issues end up being delegitimized and important diagnoses end up being missed.

SOMATIZATION: Conversion of a mental state (as depression or anxiety) into physical symptoms; also : the existence of physical bodily complaints in the absence of a known medical condition. (source: Merriam-Webster)

If a doctor is convinced that a patient’s complaints are mental in nature, then by all means pursuing further evaluation to determine the source of those psychological issues, whether it be depression or anxiety, is warranted. However in many cases, that doesn’t seem to be the next step — a doctor will dismiss the symptoms as emotional manifestations and provide no further treatment; which begs the question as to whether they would do the same if the patient was male and presented with the same complaints.

Part of the challenge, undoubtedly, is the fact that women routinely have to deal with unpredictable aches and pains which are considered to be a normal part of our lives. Hormonal swings and surges, headaches, monthly bleeding, childbearing, childbirth, menopause — the list goes on. Women are constantly subject to changes in our bodies which we are expected to accept without question. For the most part, we don’t complain (to our doctors, at least), except when something is different or unexplained.

This is not something for which we should be discredited.

If anything, women should be (in general, as a whole) given special credence when it comes to self-reporting. Most women are taught and groomed to be more aware of their bodies and the changes that occur: It’s perfectly normal that we become aware of changes, and become aware of them early.

Of course the problem with catching wind of things in the early stages of illness is that not all of the diagnostic signs may be evident yet. That takes time. That takes testing, and ruling out multiple hypotheses before you lock down the right diagnosis. Which is all the more reason for not dismissing what may seem like vague and non-specific complaints: Further monitoring is necessary to determine what will develop.

If somatization is by definition physical symptoms in the absence of a physical cause, for it to be labelled as such, you have to wait long enough to determine that no cause will present itself.

Hypochondria image 2bUltimately, even if nothing else physical does develop: A patient who is in distress needs to be monitored and needs to be treated, no matter the cause.

Hysteria and somatization are labels which have reached such widespread use that it has become an almost universal assumption, both within the medical profession and in the public at large, that the cause-and-effect equation works in one direction only. The reality is so much more complicated.

The assumption is that anxiety or depression are causing the physical symptoms, when the reality is that for many, anxiety and depression are themselves symptoms of their illness.

MALAISE: A general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify. (source: Google)

In the early stages of disease, the physical changes which are happening within the body cause anxiety in the patient both due to the unexplained nature of their physical symptoms, as well as from very real physical changes and damage. Many diseases, especially autoimmune illnesses, involve whole-body changes that affect the systems which control cortisol levels, adrenalin, and mood.

“Just because I’m paranoid doesn’t mean they’re not out to get me.”

When your body is quite literally under attack, being hyper-aware of that fact and taking note of what may seem like innocuous changes is just good crisis management. What gets misconstrued for hypochondria is really just a form of hypervigilance.

For many chronically-ill people, the notion that they are hypochondriacal is reinforced by their conversation patterns and behaviours. They readily talk about each new ache and pain, and rattle off the results of their latest doctors’ visits. For the people around them, this can seem both self-obsessed and a self-fulfilling prophecy: If you keep talking about being sick, you’re going to get sicker. [NB. That’s not how that works.]

But again, it’s a no-win situation for the sick person. As patients we are trained to rattle off our symptoms to each and every medical professional we meet. We are expected to be self-aware and to advocate for ourselves. We have to do research into our diseases and be ready to steer our care in the appropriate direction. Being aware and informed about our bodies (and about illness in general) is about self-preservation. It’s not that unusual that we might want to talk about it and share information, just as anyone would share other parts of their lives with the people closest to them.

HYPOCHONDRIA: Abnormal anxiety about one’s health, especially with an unwarranted fear that one has a serious disease. (source: Google)

Hypochondria is a clinical term. It describes an abnormal obsession with sickness. Labelling someone who is anxious about their health (or who presents with an as-yet-unidentified illness) a hypochondriac is akin to calling someone who likes a tidy house obsessive-compulsive. When it’s done by a medical professional, it’s harmful and dismissive. When it’s done by your friends or family, it’s hurtful and ostracizing.

Anxiety isn’t something to be so quickly dismissed — while clinical levels of anxiety can be paralyzing, anxiety in its initial stages is often a warning sign. It’s your body’s way of signalling that something is wrong and needs to be addressed. Listening to that signal can save your life.

/rk

Advertisements

The Elevator of Grief and Acceptance

When you’re first diagnosed with a chronic illness, there is, quite understandably, a period of adjustment. There are the physical changes that are now an undeniable part of your life. There are treatments, doctors’ appointments and medications. You are likely to be more tired (if not thoroughly exhausted); whether it is from the side effects of medication or from the inevitable toll that illness takes on your body as it tries to heal itself. But perhaps the hardest adjustment is the mental processing as you come to terms with these changes.

elevator

(photo/www.forms-surfaces.com)

ONE

Your first chronic illness hits you the hardest, but can also (down the road and after much introspection) be the easiest to bounce back from. Obviously the changes to your life are hard to take, but the biggest hit is to your identity. Going from being a healthy ‘normal’ person to a ‘sick’ person is a devastating blow. There is a lot of crying and “why me?” and feeling sorry for yourself. Accepting that this is your new normal can be very difficult to accept, especially as you work your way through the available treatments for your illness and they prove ineffective.

Ultimately though, you’re faced with two options: giving up or moving forward. Some do give up. Or resort to substance use. Or commit suicide. But for most, I think that the feeling that you can’t possibly go on fades a bit when you discover that you are going on every single day.

So while you may not recover physically, you recover mentally (if bruised and battered under the surface).

TWO

Your second chronic illness feels like a betrayal. The first one was a betrayal too, of course — bodies should be able to be trusted to do what they are designed for — but the second illness carries with it a meanness that catches you off-guard. You faced your first illness head on and survived it! You put in the work from grief to anger to acceptance! How is this possibly fair? 

Pushing through the grieving process the second time goes faster because you already know the drill. You know there’s no point in fighting it. There’s nothing to be gained by being a drama queen or asking for sympathy. You’ve already lost some friends with the first illness and so losing some this time around doesn’t feel like a surprise, just an inevitability. You accept treatment options, but without the same optimism you had with your first illness. Time has taught you that treatments for chronic illnesses are hit and miss. Publicly you are stoic. You cry in private.

You find your new normal and accept it, but there is an underlying bitterness that wasn’t there before.

THREE

With your third chronic illness you start to feel paranoid all of the time. Your body feels like the enemy. With all the drugs you’re on it’s hard to distinguish the difference between symptoms and side effects. You don’t expect treatments to work, but you go through the motions anyway, because you can’t quite bring yourself to give up. You have almost no friends now (and you’re not a very good friend to the ones you have), your marriage(s) have disintegrated and you’re worried you’re going to be fired because of missing so much work.

You feel out of control. Every time there is stress in your life, whether it’s a change in dinner plans or moving houses, you freak out and have a panic attack. You find being around people emotionally taxing.

You don’t feel safe. You wait for the other shoe to drop.

FOUR

When your fourth chronic illness is diagnosed and it’s a mental illness, you’re not surprised — it only confirms your shame. By now you’ve long since suspected that your physical deficiencies are your own fault. You know that it’s your personal shortcomings and the poor choices you’ve made that have initiated this reign of terror. Whether it’s God or the universe or karma or just some sort of subconscious internal justice, you deserve what’s coming to you. The battle lines have been drawn and the war is on. You feel sorry for yourself, but you’re inclined to lie down and take it.

It takes a long time to push through this one. But you keep not dying and life gives you reasons to care so you try again.

FIVE

Your fifth chronic illness feels strangely anti-climactic. By now you’ve become an expert at spotting the signs and knowing when something’s not right with your body. You know the diagnosis before it’s given. Hearing it is still upsetting, but in a strange sort of detached way, like it’s happening to someone else. You’re not sure if you’re just in denial or if maybe this is your new, more mature way of handling these things.

SIX

Fuck being mature. Fuck being reasonable. Your life is over. You’re not dead but you’re in a state of limbo where you’re trapped in your body and even your mind won’t even cooperate. You think a lot about suicide, but mostly about how mad you are that it’s not an option. You feel bitter and angry at everyone.

Then things ease up a bit and you think “Now’s my chance. I have to act quickly to get the things done that are important to me.” And by doing those things you start to have some hope. You think maybe you can just pretend that things are normal.

SEVEN

“This is how it is,” you think. “I am never going to escape this.” You try to look ahead to the future and all you see is your useless body, crumbling before you. You know that you are falling apart. Organs are going to continue to fail. You see a pain specialist who tells you that there is no solution and that you are going to have to learn to live with the pain, just like you have had to learn to live with all of the other unfair tricks that your body has played on you.

None of the illnesses you have come with cures, except for that one time you had cancer and they could just cut it out of you — you hold a certain fondness for that cancer for at least coming with a clear solution. Now your illnesses are causing other illnesses, like a cascade of evil dominoes spreading throughout your body. You hate your flesh and bones. When the pain is very bad you want to cut off the offending limbs; except the pain is so widespread you’d be left with nothing.

You try to remember the stages of grief and find your place back at acceptance, but acceptance isn’t the problem. You accept that this is reality. You accept that the eighth illness is coming (and for that matter nine, 10, 11…). You just don’t know how to be happy about that. Or at least during that. You don’t know how to not be bitter and angry all of the time, when everything is a struggle. You don’t know how not to guard yourself and close yourself off from the world. You don’t know how not to be scared.

It’s not that you haven’t learned how to do these things before — it’s just that with each successive illness, there isn’t much space left in your mind to do the good things. You’re so busy fending off each illness from all sides on a daily basis, that trying to also connect with people, and being trusting and relaxed feels impossible.

How do you relax in the middle of a war? How do you ignore the pain in your limbs and the screams in your ears (and new threats all around you) and try to be happy in spite of it?

/rk

Things That Are Making Me Anxious Right This Second

IMG_1785-EFFECTSaka. I HAVE PLANS
(p.s. This is only an example… it could really be anything at any given moment)

I am worried because I have plans for later today.

I am worried that something will come up and I will have to cancel those plans.

I am worried that maybe those plans already got cancelled and no one told me.

I am worried that maybe I got the day wrong and those plans aren’t today anyway.

I am worried that maybe I got the day right but it’s a prank and people are going to make me look foolish in some way.

I am worried that I never had those plans in the first place and somehow dreamt them up.

I am worried that if I go I will have to be around other people.

I am worried that I will say or do something to embarrass myself.

I am worried that I will say or do something to hurt or embarrass someone else.

I am worried that I will not know whether to take off my shoes or not.

I am worried that once I do take off my shoes and I will be cold and my feet will be numb.

I am worried that their house will be cold and I will be cold and I will get sick.

I am worried that I won’t wear the right clothes and I will be cold and I will get sick.

I am worried that I am already sick.

My jaw hurts.

My head hurts.

My heart is beating too quickly. I am worried that it is beating wrong.

I am worried that no one likes me.

I am worried that people pretend to like me but talk about me behind my back.

I am worried that anyone who thinks they like me just doesn’t know me well enough.

I feel tired and I want to sleep. I want to take a nap to calm down.

I am too worried to sleep. I am worried I will oversleep and miss my plans. I am worried my alarm won’t go off.

I am worried I didn’t get enough sleep from my nap and now I am more anxious and I’m worried I’m too tired for my plans.

I’m worried that I’m not spending enough time with my pets. I’m worried about leaving them alone.

I’m worried that if I take the car I will get into an accident. I’m worried I’ll hit someone else. I’m worried that I will suddenly and uncontrollably drive head-on into a traffic barrier and die.

I’m worried if I take the bus, I will miss the bus. I’m worried if I take the bus, I will have to talk to someone. I’m worried that my bus pass will be rejected. I’m worried there won’t be any seats left. I’m worried I’ll get hurt because standing on the bus with a cane is difficult. I’m worried the bus will get into an accident.

I’m worried that people will see how anxious I am. I’m worried I’ll start shaking. I’m worried that I’ll cry. I’m worried that I’ll run to the bathroom and not come out. I’m worried that they’ll think I’m a crazy person. I’m worried that they’ll KNOW I’m a crazy person.

I am worried that I have to cancel my plans RIGHT NOW because I CAN’T GO because I am TOO ANXIOUS and I need the anxiety to STOP RIGHT NOW before it is time to leave.

I am worried that by not going, they’ll be angry and they won’t trust me and they won’t invite me again.

I’m worried that they will.

/rk

What’s You is Mine

I used to steal things.

It was wrong, certainly, and I felt a tremendous guilt over it at the time, but largely because I didn’t understand why it was only directed towards the people I cared about. I think people take things for a lot of different reasons, and while kleptomania is the clinical label we put on it when people do it compulsively, trying to paint every person who has this compulsion with the same brush ends up dismissing the very real dysfunctional thought processes which underly it.

I didn’t steal things very often, but it occurred enough times as a child that I was convinced that I was a ‘very bad person.’ I took a swan-shaped perfume bottle from my best friend (and forever added water to it, trying to get it to last for as long as possible). I took a tiny drummer boy pin from my grade two teacher’s desk at Christmas time. I occasionally took tiny mementos from my mother’s desk or jewellery drawer.

I didn’t do these things because I was angry or wanted to hurt them. I did it because I loved them. But I cannot deny that these acts must have hurt them, and would have hurt them even more to know that I was the one that did these things, because you (especially) don’t steal things from people you love.

I think to understand why I did these things, you need to look at the behaviour that accompanied the theft.

stealingI was an anxious child (who grew into an anxious adult). I didn’t have any outlet for that anxiety, so it was up to me to develop my own self-calming techniques (calling them techniques suggests way more self-awareness than I had at the time — it’s taken me years to recognize these patterns for what they were). One of these strategies was (what I thought of as) treasure-hunting. If the opportunity presented itself, I would go through hidden spaces and look for little treasures: items that made me happy and calmed me through tactile stimulation. It started with my own things — it was always possible in my messy room of hoarded things to dig through my piles and find things that I had forgotten about. Finding those things anew and touching them, rubbing them between my fingers, putting them in my pocket or even touching them to my lips (or putting them in my mouth) would calm me.

But sometimes my own things weren’t enough. The older I got, the better my memory was and the more that I needed novelty, and I needed to branch out. I would sneak into my mother’s room and go through her drawers or her closets. On her upper shelves she had some collectible dolls — I would take them down carefully and look at them, touch them, but never remove them from their case. I wasn’t allowed to play with them and I although I did gently handle them, I never risked damaging them by taking them out of their boxes. For the most part, I’d just dig about and put things right back where I found them. It wasn’t until later, when my anxiety was no longer satiated by looking that I took things.

I didn’t take a lot. Usually just one thing would be enough. Somehow having something of my mother’s (and later my best friends or favourite teachers) was enough to bring me comfort when I was anxious. Those items held extra power because they belonged to the people that I loved. It helped when I was scared, and certainly helped when I was apart from them.

I didn’t steal from strangers. I didn’t steal from my brother or father — the idea of doing so never even crossed my mind.

I think I recognized after taking the perfume bottle from my best friend and the pin from my teacher that it was wrong to take anything that they would miss or that was too precious. I didn’t want to hurt anyone, I just had this need that I couldn’t suppress. I tried to only take things from my mother that seemed lost or forgotten to her already.

I don’t remember exactly when the habit passed — somehow I graduated from being a child to a teen and I wasn’t stealing any more (other than borrowing clothes from my mother, but that wasn’t something I hid).

I thought it was past me until all of a sudden in my late thirties, I found myself at my mother’s house one day while she was at work, going through drawers and cupboards. I didn’t realize it at the time, but I was in the upswing of a manic phase (the one that ended up defining my bipolar disorder). I had been sleepless for weeks at this point. I had gone over to my mother’s house to pick something up and ended up pacing room to room, looking for nothing that I could verbalize.

I ended up finding some paintings that had been tucked away to the side of her dresser and just knew that I had to rescue them and they needed to be in my house. Suddenly the only thing that mattered to me was that these beautiful paintings were being ignored, unhung and forgotten.

A week or two later, when my mother came over and saw one of the paintings hanging at the top of my staircase, she was furious and (not surprisingly) hurt. She demanded them back and when I got upset and tried to point out that she hadn’t even noticed they were gone, she took them and left. I tried to plead with her and explain that I was trying to save them, but we were both hurt and angry and not really listening to each other. I cannot deny that what I did was an aggressive act (or that it seemed so to her), but my defensiveness was in part out of confusion that she thought I did it to hurt her, which in my delusional mind, I hadn’t.

It wasn’t until later, long after the incident (and after drug therapy had treated the manic episode) that I began to question why I had done it and how it related to a larger pattern of behaviours.

Any person who experiences anxiety (or any other mental illness) will tend to develop calming strategies, many of which are potentially self-destructive (like smoking, alcohol or drugs). Unfortunately, with something like kleptomania or drug abuse, the symptoms of anxiety can mask the underlying cause, which will inevitably go untreated. More clinicians are recognizing this fact, which is why there are more dual diagnosis treatment centres opening, thankfully.

For myself, I’ve tried to learn to identify which of my behaviours are related to my anxiety, and which are acceptable and helpful outlets for those feelings (this list is only mine, and the things that I call risky or bad are simply that for me):

RISKY

  • alcohol
  • drugs (some, potentially)
  • stealing
  • violating other people’s personal boundaries (going through their things)
  • lists
  • exercise
  • looking at the scale

SAFER

  • window shopping
  • walking
  • magazines
  • flowers
  • looking at bright, pretty things

The top list will confuse some people, I know, because it has lists and exercise on it. For me, the problem is that besides anxiety, I am prone to obsession and compulsion. If I keep things light and not too focused, I’m okay, but unfortunately that’s not how things tend to unfold. Things with numbers or lists or goals tend to push me into overdrive and I compete with myself. In the past that has resulted in compulsive exercise and anorexia.

Sometimes though, colour and design are enough mental stimulation to calm me. If I can walk through a HomeSense or Ikea, walk the aisles one at a time and pick up each little knick knack, turn it around in my hands and put it back, that’s enough to settle those feelings in the back of my brain. Without realizing it, I’ve had this habit since I was a child — first at the toy store and then at any store at the mall. kIt’s such a simple thing and it doesn’t hurt anyone. The challenge in the past has usually been that I haven’t been able to express why I needed to do it. This has led to whoever I’m with growing impatient with me and rushing me through the process, leaving me feeling unfulfilled and even more stressed out.

One of the constants of living with bipolar is the lack of psychological or psychotherapeutic counselling. With drug therapy as a catch-all for treatment, we as patients are forced to be explorers of our own psyche, trying to dissect each little action or behaviour and figure out how it relates to the whole. With each new realization I feel like I take a step closer to being a whole person, but I am also filled with growing regret over the time I’ve lost and the people I’ve hurt because there was no one to step forward and guide me through this process years ago.

/rk

If a Crazy Person Falls in the Woods and No-One’s Around, Do They Make A Sound?

The other day in the car with a family member, we were having a discussion about how hard it is to access adequate healthcare (specifically pain treatment) when you are mentally ill.

“Is it?” they said.

“I’ve seen it happen countless times with other people I know, and it certainly has been for me,” I said.

They looked at me with confusion. “But you’re not mentally ill?”

I was gobsmacked.

I asked them what they meant, since they knew I was being treated for bipolar, and they said, “But you’re not crazy crazy.”

It’s a weird thing that family and friends do — even if they can bring themselves to acknowledge your diagnosis, they still don’t lump you in with (what they imagine to be) the raving lunatics who get locked away in mental wards. The thing is, not everyone who is mentally ill ‘looks’ like a raving lunatic. But some do. And some people can be both of those things. The point is, you do us a disservice by trying to candy-coat our disorders.

It’s not that I want to come down too harshly on the people that support us, the mentally ill. A huge number of people in our lives (possibly the majority) will turn around and walk away because they simply can’t handle being around someone who is mentally ill. Maybe because all they see is the stereotype of the maniac. So the last thing I want to do is alienate those who can see past their own fears and are game to stick it out.

But you also don’t get a free pass for your ‘altruism.’ I mean, when it comes down to it, caring for and about your family members or best friends should just be a normal thing that you do. The fact that they suffer from mental illness is certainly a challenge, but we all come with our own bits of baggage and as long as your mentally ill friend is a putting work into the friendship too, the fact that they are mentally ill shouldn’t be something they need to constantly apologize for.

If you are going to support someone who has mental illness, you need to acknowledge all of their parts. Glossing over their illness or pretending it’s not really there isn’t helping them.

show my crazyThis whole business of playing down people’s mental or physical disabilities seems to be something that is culturally ingrained. Parents play down illness when kids complain because they think they’re just doing it for attention. Doctors play down symptoms and refuse to apply labels because they are convinced that it will become a self-fulfilling prophecy and patients will develop somatic complaints or hypochondriasis (the nocebo effect). But this can have a devastating effect on people with genuine complaints who end up feeling like no one believes them, which in turn can lead to self-harm and avoiding much-needed medical attention.

When you care about someone, avoiding using labels or acknowledging their mental illness feels like you’re being kind. Certainly the last thing you want to do is to bring it up every time they behave erratically or use it as a weapon in arguments. You can’t blame everything that someone does on their illness. So it might seem like the kind thing is to avoid the label entirely, to prove that you see the person beyond the illness.

The problem with acting like their illness doesn’t count or that they are some special case is that it a) is not recognizing the whole person, b) suggests that you think that part of them is somehow unacceptable, c) makes it extra hard for them to get help or talk to you about their illness.

In terms of c), getting help can be in big ways or little ways. It can mean that they feel safe calling you when they need help getting to the hospital, or it can just mean that they feel safe telling you that they can’t meet up today because they feel extra anxious. It is really hard maintaining friendships when you have bipolar and anxiety, for example, for the simple fact that you end up having to cancel or reschedule plans based on your mood. If you are someone I feel I can trust I would simply explain what my issues are that day and reschedule. If you are someone I don’t trust with my mental illness, I just might not make plans at all, for fear of disappointing you or having to deal with uncomfortable questions.

There is a growing trend for public acceptance of mental illness (depression specifically), with lots of public campaigns to increase ‘awareness.’ I remain slightly skeptical about such campaigns, mostly because what I see is a lot of people sharing memes and pre-scripted platitudes with very little actual one-on-one support of people in need. It seems to me that we’ve traded the public erasure of mentally ill people for public awareness and private erasure. Now when people try to speak up about their mental illness, other people pipe up with “well I have depression too, so you’re not special.” It’s great that more people are coming forward with their own struggles, but the last thing that should be allowed to happen is for it to result in a watering down of the significance of mental illness. That more people are experiencing mental disturbances should not make it less significant. It should make it even more apparent that it is an important issue.

It is crucial that we do not create a further hierarchy or caste system of mental illness (depression, anxiety and bipolar are treated in a much more favourable way than schizophrenia or Tourette’s, for example), and playing down someone’s illness as if it is not ‘one of the bad ones’ or ‘doesn’t count,’ hurts not only them, but the mentally ill community at large.

/rk

New Book!

I’m pleased to announce the soft launch of my latest book, “I’Mmoral: Poems for Unrepentant Sinners and Free Thinkers.” For the time being, the eBook is available only on lulu.com, but is being rolled out for distribution through Amazon, Kobo, NOOK, and more. Once I have approved the proofs of the paperback version, I will advise where those can be purchased as well.

cropped-immoral-image.jpegSummary: What would the war cry of a mostly introverted, mentally ill, autistic, genderqueer, physically disabled, feminist, atheist, polyamorous woman sound like? A lot like this. Using a combination of essay and free-form poetry, R.K. confronts the status quo and dissects it, inspecting its parts and discarding the bad bits. In spite of tackling some obviously serious and controversial topics, such as abortion and the anti-vaccination movement, she approaches her subjects with humour and then slaughters them with equal parts derision and kindness.

Price (eBook): $2.99 / Click here to view/buy

Thanks very much for your support!

/rk

I Dub Thee XYZ

IMG_0057To say I have never felt the need to define my identity would not be fair or accurate. It has simply never seemed to me to be a thing that is static or definable. At any point in time I may present a certain way, or think of myself in certain terms, but these labels always feel transient and insufficient. I resist being pinned down. I fear being labeled one thing forever.

It might be an easier prospect if any one label had ever possessed any sense of ‘rightness’. Instead I’ve spent a lifetime feeling like an enigma even to myself, and that’s a lot less sexy and mysterious than it sounds. While labels may not be important to everyone, they are useful tools in explaining what you’re (at least superficially) about to the outside world. More important than the labels themselves is what they represent — a clear sense of self — which I don’t have. Or is it that I am just afraid of saying the words out loud and committing to being unchangeable from this point on? What if the thing I think I am today is wrong and what I really am doesn’t even exist yet?

~~~~~~~~~~~~~~~~

My earliest identity was pretty typically defined by my relationships: I was a child to my parents and a sister to my brother. That I was a sister and inherently female didn’t actually establish itself as a thought process for me back then as much as that we were different from each other. I was older and he was younger. I was not him and he was not me, and therefore his role was brother and son and mine was sister and daughter. There was a certain logic and balance to that and it didn’t feel overly clouded by sex or gender, especially given that we dressed pretty similarly most of the time (hand-me-downs in the 70s meant a lot of plaid shirts and cords or overalls for both of us).

Beginning daycare and school brought new and confusing questions about my identity. Suddenly gender roles became an unavoidable part of my existence, and my less-than-skillful ability to decipher and mirror them led to alienation from my peers. Nothing felt natural or right. I knew I wasn’t like the boys (all the boys I knew were either athletic and confident or cruel and violent). But I also didn’t feel like I was one of the girls. Kids (male and female) would tell me I wasn’t pretty enough to be a girl and that my freckles made my face look dirty. I was simultaneously fascinated and terrified by the other girls in my class; they could also be cruel, but usually through emotional manipulation or shunning. I would try to fit in with them by mirroring behaviours, or giving them gifts, or dressing the same, but that just ended up painting me as the weird stalker girl. So I switched from trying too hard to not trying at all.

For a long time after that, my identity was… nothing. Invisibility. Most of this was self-preservation. Being invisible protected me from bullying at school. It protected me from abuse at daycare (It was a sickly mixture of pride and relief that I felt when one abuser said, as he repeatedly whipped my brother and I across the legs with a wet towel, “Why can’t you be more like her, you don’t hear her crying, do you?”). Being able to be quiet and disappear into myself saved me from what I was sure would only be worse abuse. It made me a boring target. I got very good at stifling my emotions and not reacting. No jumping at sudden noises. No flinching. No me. Being no person and having no identity seemed like the safest identity, even if it wasn’t a real identity at all.

Obviously I couldn’t stay invisible forever, and I made various attempts throughout my childhood and teens to reach out and form connections. Even though I feared the inevitable rejection when I was bound to screw something up and alienate them, I still ran into the occasional person who lit up my senses and made me want to know them more than my fear warned me against it. This meant locking down my gender identity. Well, sort of. It was more by a process of default than anything else. Heteronormativity was what presented itself, and so that’s what I was, at least on the surface: A girl attracted to boys. It was the only option that seemed viable in the environment I was in (or so I thought at the time: naivety might be responsible for my narrow view of the world at that time). If I wanted my friendships with girls to thrive, I needed to be straight. I’d already learned in the past that coming on too strong would put them off. I sure as hell wasn’t going to risk crossing any lines and losing my one friend (There was always only one friend. It might have been a different one friend at different times through the years, but I have always been a best friend kind of person. And that’s not necessarily a good thing: I tend to put all my expectations and desires in one pot, and that’s a lot to live up to.) Being ‘normal’ (at least on the outside) felt safe and reassuring. Spending my time with girls while mooning over the occasional guy felt right. I liked girls and boys in different ways. I just wasn’t sure if the different ways were the same as my girlfriends. I did know that I didn’t seem to be attracted to the same kinds of guys that everyone else I knew was.

IMG_0162Looking back, it feels a lot like I just put thinking about my identity on hold. I just assumed I was cis-gendered. Okay, that’s not entirely true. I assumed that cis-gendered was how I was going to live and that no other option was really viable. Not being female didn’t feel like an option. I also knew I wasn’t gay because I liked guys (well, some of them, anyway). But in my private explorations and masturbatory fantasies, I knew that I fantasized about both men and women sexually.

It wasn’t until my 20s when suddenly I was very strongly attracted to a friend of my best friend that I came out as bisexual to her (the best friend, that is). After that point I felt no qualms about sharing this fact with boyfriends or anyone who would ask, but it didn’t actually yield much in terms of relationships with women other than being invited into a few foursomes in college.

Once I married for the first time, I felt like any chance at being anything other than an outwardly straight woman was completely gone. Having a child left me feeling even more locked in. In a similar way to when I was a child, my identity was once again defined by my relationships, except now there was an added burden. I felt I needed to be those things out of responsibility to them. It didn’t feel possible to change who I was without causing irreparable harm to the people around me.

When that marriage fell apart, and the one after that as well, I still felt confused and dissatisfied with the image I was projecting to the world. An unfortunate choice of treatment with anti-depressants for what turned out to be anxiety due to bipolar ended up pushing me into hypomania (and inevitably full-blown mania and delusions, followed by a horrible crash of severe depression). During this period I started chasing the numbers on the scale (and on my clothes) downward. I became obsessed with the number zero, or even better, less than zero. I got my weight down to 103, sure that I could crack the lower side of the 100-mark. I made it to zero in clothing sizes and counted it as a victory when I fit into my first piece of clothing in the 00 size (and then even a pair of jeans in the juniors department). It was more complicated than anorexia or body dysmorphia. I was experiencing a recurrence of my childhood identity crisis and my desire to disappear, but with a new twist. I couldn’t be me unless I could see my bones. The only way to truly get to the truth of who I was inside would be to bring the inside out. The flesh was getting in the way of my real self. For so many years I had avoided cameras and reflections of myself because what I saw looking back at me didn’t match the image in my mind. Suddenly I could see the real me peeking through. I didn’t shy away from cameras anymore (Although ironically, there are almost no pictures of this period of time because when you develop a reputation for not wanting your picture taken, people start to take you at your word).

In spite of being a fundamentally unhealthy thought process, it was the first time in my life that I felt like I was finally coming close to understanding who and what I was, and what I was meant to become. As the pounds fell away and I lost the more obvious characteristics of being ‘feminine’, like breasts and curves (and having regular periods), and could see what lay underneath, I felt more comfortable in my body. I still didn’t feel like I knew what I was, gender-wise, but I no longer felt so locked into decisions that had been made for me before birth. My body wasn’t forcing me to be a woman.

Of course, delusions (and there were many more than just those tied into my body) generally can’t be allowed to continue unchecked, and I eventually had to be treated for my mental illness, a process that involved a cocktail of drugs that fortunately/unfortunately caused me to gain all the weight back (and much, much more). I wouldn’t say I was healthy physically or mentally (I mostly felt emotionally and sexually castrated). I felt trapped by my body again, and thanks to my crazy-person shenanigans, I had no job and anything approaching any sense of personal identity had been obliterated.

~~~~~~~~~~~~~~

This is getting to be an awfully long story of personal discovery for it to have no personal discovery at the culmination of it.

I’d like to say that seven years from my breakdown I’ve had a revelation and finally have my shit together as far as my sexual and gender identity are concerned. In terms of sexuality, I finally became part of a community where being bisexual or gender non-conforming is accepted, but it hasn’t yielded any serious relationships with women. I did fall in love again and marry a man; although I confess that what initially attracted me to him was the fact that he didn’t entirely fit a 100% masculine mold (he’s definitely cis-male, but the first man I’ve been with who is more heteroflexible than heteronormative).

For a while, I thought I was beginning to grasp my sexuality and labeled it pansexual, outwardly explaining it as being attracted to people without regards to gender, but inwardly being pretty sure that what attracted me most was both of those things in one person, especially gender-fluid people and specifically persons with both male and female sex organs/characteristics. This set off a whole series of confused shame feelings while I tried to parse whether what I was doing was simply fetishizing transwomen. I don’t think there is a simple answer to that; ultimately I think that fantasies are fine (and private), as long as you treat real people with respect.

This revelation didn’t interfere with my relationship with my husband, since we are polyamorous and thankfully I could be open about it. But it still didn’t entirely answer questions I still had about my own gender identity. I didn’t feel male or female, but as usual I just let people assume I was female because not only did I not want to have to explain how I felt, I also didn’t have the words to explain how I felt.

Then my sexuality up and slipped away.

I know that this is not unique. There are people all over the world that experience sexual dysfunction, and while I know that technically this is what I am experiencing, it doesn’t feel like that. It feels like transformation. Whether it’s from the drugs I take or from nerve damage from my diabetes, I started losing sensitivity; gradually at first, until one day I realized it was just gone. But it’s more than that: I don’t feel any sexual attraction at all anymore. I have zero interest in sex. I am still romantically attracted to people (I think? When you go from a hypersexual being to no longer having any sexual feelings, it can be a bit tough to separate sex and romance for the first time in your life). At first this terrified me, not because I missed sex, but because I didn’t. And that hurt, because I didn’t know how to explain that to my husband. I felt a bit like I had committed fraud in marrying him and then turning around and completely changing the deal.

Claiming an asexual identity also feels like a betrayal. Coming out as asexual means more than just claiming something for myself, it is a reflection upon him and on our marriage. It also turns us into a cliché: the couple who is poly because the wife is frigid.

I’m still not even addressing my gender identity, am I? I put it off and put it off because I always have this sense that anything I lay claim to and change later on then becomes a lie. When I say I don’t have the words or terms to express who I am, that also isn’t as true as it once was: we’re smack in the middle of a gender revolution and treating my own situation like I’m some special snowflake only hurts me, because my struggle is invisible. No one knows that they mis-gender me, because I don’t correct them. Stewing over things other people say because they don’t understand me makes me sound like some emo teenager pouting in my room. But I spend a lot of time feeling “what’s the point” of coming out when it will just increase the pressures and expectations upon me to conform to a new ideal. Being cis is easy. It’s a cop out and you shouldn’t be a thing just because it’s the easy thing to do, but that it is easier no one can deny.

I don’t want to be male or female. Or at least, I don’t feel like I am either of those things. I joked to my husband that “I’m male in the winter and female in the summer,” but that was really a simplification and doesn’t suffice as an explanation. I think gender-fluid or agender feels more correct, but even those words don’t cover it properly. Maybe I’m just androgynous and it isn’t a gender thing at all, but I don’t think so. Certainly I present as mostly femme, but I can’t figure out how much of that is down to socialization: I don’t fully have the confidence to let myself not be female and explore what that might look like. Much like being openly asexual, I feel scared about what the implications are to my husband and son if I explore my complicated relationship with gender openly. It should be stated, clearly, that my husband, rather than freaking out at my revelations, has been very supportive. But it’s one of those things that you don’t really know how it will go until you’re in the middle of it, you know?

There are no great revelations here. It feels a bit like running internal diagnostics. All I can do is rule out what I’m not and work closer to the truth. I’m not straight. I’m not male or female. I don’t think I’m trans (although the trans* umbrella feels closest to correct). Asexual agender polyamorous panromantic feels something like close to right in this moment, but that might change an hour from now.

I just want to be allowed the same freedom granted to every new age hippie to ‘find myself’, at my own pace, and by my own terms.

/rk