Your Arguments Don’t Make Sense and I’m Still in Pain

I’ve been in a funk for the last month. Which is an extension of the funk I’ve been in for the last six months, which is an extension of the funk I’ve been in for the last few years.

I’m in pain.

This isn’t new, of course — pain started for me in my early 20s with my ulcerative colitis, increased with my diagnosis of ankylosing spondylitis in my late 20s, jumped higher still in my late 30s with the development of Crohn’s fistulas, pushed even higher in my 40s with degenerative disk disease in my neck and the spread of my AS to my shoulder joints, then reached what I thought was a complete tipping point a few years later with the development of peripheral neuropathy from my diabetes. And then I developed fibromyalgia, which although not present every day of the year, comes in several-month long waves where it takes over every. single. joint and muscle. Add that to the everyday pain I was already suffering and I thought I was going to lose my mind (spoiler alert: I’ve already lost my mind and I don’t have any more to lose).*


I hear the gallop, gallop, gallop of my heart.

My pain was so bad that beyond my subjective reports of how bad it was (which, to be honest, don’t amount to a hill of beans in the medical world), that my blood pressure had gone from its previous normal of about 110/70 to about 140/100 and rising. We were starting to have conversations about blood pressure medications.

Instead I convinced my family doctor to refer me to a pain specialist and in the meantime, we switched my pain medications to a different and more powerful narcotic.

Suddenly my blood pressure was normal again.

This isn’t a coincidence. Blood pressure is a pretty standard measure of pain in hospital settings: It’s one of the reasons they take your blood pressure in the ER and then ask you if it’s different compared to your ‘normal.’ About five years ago I had pancreatitis and refused pain meds and my blood pressure started going so high that they gently but firmly insisted I accept morphine. It settled back down. My pain decreased. Until the fibro started and things got tricky again, of course, and I asked for more help.

Pain causes stress on your body. That emotional stress causes stress on your heart. This is one of the reasons why it is so important to manage pain. In spite of that, there has been a growing movement in the pain management community to turn away from narcotic painkillers in chronic pain management care.

The goal of this new movement is to focus on the quality of life of the patient and the changes which can be made to accomplish that (rather than focusing on completely extinguishing pain). These options include non-narcotic drug options (in the case of neuropathy and fibromyalgia – anti-depressants such as Cymbalta or anti-seizure medications like Lyrica), exercise, psychotherapy (cognitive behavioural therapy), group talk therapy and a variety of other techniques. The goal of the non-drug therapies is not to eliminate pain, but to learn to live with the pain.

Actual advice from my pain doctor:


“Stronger pain medications exist, but since they are unlikely to work, we will not give them to you.

Narcotics have the potential for abuse and have withdrawal symptoms.

“If you talk to others about your pain, at least you won’t feel alone.” But you will still feel pain.

“Physio, massage and talk therapy are temporarily helpful but some people still appreciate them.” Of course the benefits are completely defeated by the stress and pain of the ride there and ride back, and emotional stress of dealing with yet another doctor.


Anti-depressants don’t work for everyone, but they might work for you so you should at least try them.

Reads black box warnings: Lyrica has the potential for abuse. Use with caution.” “Many Cymbalta users experience serious withdrawal symptoms.

“Yes it’s possible that taking Cymbalta could send you into a manic episode, but we can deal with that when it happens, and maybe give you other drugs to counteract that.” “No I can’t see you every few weeks to monitor you.”

“Yes some patients on Lyrica gain weight, but not all and it’s not that big a deal.” Except that doctors check your weight and BMI every visit, so clearly they think it is important. Zyprexa made me gain 40 lbs. I have diabetes. And joint pain that is worsened with weight gain. And I also suffer from body dysmorphia triggered by weight gain. But no big deal.


Doctors: You are not making sense. Get your arguments straight, stop applying double-standards that are associated more with the stigma of prescribing narcotics than they are with the actual risk (or benefit) of narcotics to the patient. You can’t use one argument against narcotics and then ignore the exact same argument when it suits you.

All you are telling me that it creates an easier standard of care for you.


*This roadmap of pain doesn’t include all the other little side trips along the way like pneumonia, asthma, costochondritis, bursitis, general fatigue of autoimmune disease, vitamin D, B12, and iron deficiencies, pernicious anemia, bipolar disorder, anxiety, OCD, major depressive episodes, schizoaffective episodes, Achilles tendonitis, brain fog, POTS, possible Sjogren’s (still waiting on that one), yadda yadda yadda.


Sometimes the Whole Doesn’t Equal the Sum of the Parts

You can only bury your identity for so long. There will always be people around you who say that labels don’t matter, or that how people perceive you doesn’t matter, and while that certainly sounds sensible and logical, it kind of adds up to bullshit.

We all want to be seen for what and who we are. Even if what we are doesn’t conform to the package we might present with (especially if what we really are doesn’t conform with the package we present with), we still have a desire for people to see the real us.

Pragmatists can argue all they want about how it’s what’s inside that counts, and that our happiness shouldn’t be determined by other people’s acceptance, and that you shouldn’t worry so much about what other people think anyway, but those people can shut the fuck up. It sucks to interact with the world and cringe every time you are mis-named or mis-labeled or mis-gendered. It’s an involuntary reaction. You can’t control your discomfort — even if you try to internalize those feelings, a glaring red buzzer goes off in your brain every time someone gets it wrong.


That’s not my name. That’s not who I am.

Think about that time that dude you worked with called you the wrong name and then you were too embarrassed to let him know, and now every time he sees you he still gets it wrong — are you cool with that? Or does it bug you every. single. time?

Even more simple than that — don’t you get irritated when you give the Starbucks barista your name and she writes it wrong on your cup? No seriously — do you brush it off or do you tell everyone about it for the rest of the day?

Being seen — really seen — is a basic human need.

We all need an identity. Of course part of that identity is what we do in life, the kind of person we are (our morals, our spirituality, our driving force), and a variety of other things, but at the core of our identity are our gender and sexuality (or at least terms that define those in some way).

I don’t think that gender and sexuality are necessarily more important than other aspects of our identity, but because they impact how we relate to others in terms of psychosocial interactions, they tend to be the focus of how we define ourselves. It also naturally follows that because these are the first two identities assigned to us at birth, they end up being attributed as having primary importance.

It’s understandable then, why this is so problematic: The attributes that are at the core of our identities — name, gender and sex — are chosen for us, rather than by us.

Obviously it might be a bit impractical to avoid assigning any of these identities until children reach puberty, but it would certainly be an interesting societal shift if at age 13 we could all have a re-naming ceremony where we decided for ourselves what and who we are. Even that doesn’t satisfy me completely — I think identity can be fluid. I think maybe it should be fluid. In the space of an eighty-year lifetime, why should we be expected to be static beings? Why must we be content to stay in our boxes?

With each label we are assigned as babies, there comes a set of expectations. This means that we are moulded by those expectations, rather than left to grow into who we really are. Even something as simple as the choice of a name can change us because of how those around us make both conscious and subconscious assumptions associated with our moniker. People (think they) know the difference between a Brad and a Brody and a Matt, or a Judith and a Jenny and a Muffy.

So even if labels shouldn’t matter, the reality is that we’ve already been labeled — wanting to re-label ourselves so that people get it right is a pretty natural reaction to what is already an unnatural situation.

For some, making changes coincides with physical transitioning which helps their bodies match the label that they identify with. For others, making changes is not so simple. Not everyone can (or wants to) fit into a normative box. Just because someone is male or female doesn’t mean they will fit into a straight-edged box of how society defines what is male or female. In many cases, a person isn’t going to fit into either binary label. And really, what is the point of setting that as a goal anyway? If we are going to define ourselves, why feel constricted by how society defines those labels?

I suppose the most obvious answer to that question is that labels only work if the person you’re communicating with knows what they mean. That’s certainly been the criticism that people have levelled against they/xe pronouns. I think that’s a lazy excuse. Every day we apply and use unique labels for the people we meet — their names. We don’t say, “I’m sorry, it’s too complicated to call you Dave. I’m going to call you Steve, just like I use for all my friends. Calling you your own name is too much work to remember.” We learn our friends’ names, and when we meet someone new, we don’t assume that their name is Steve — we ask — and then use the right name from then on (unless we’re complete jerks).

The fact that some people are more complicated in the sense that they don’t fit established labels only makes them unique. But we’re all unique. We all possess unique characteristics that make up our character and identity, and people remember those unique characteristics. You know that Bob is your friend who loves show tunes, and that Becka is your friend who loves grapes but only the seedless kind.

When we ask the people around us to use the correct labels or names to identify us, we’re asking for no more than what we all do already for the people we care about: For them to know us and see us for who we really are. By asking, we’re just pointing out that yes, this is a thing that really matters to me. It’s not asking for special treatment — it’s something you should already be doing for someone you care about. It’s just pointing you in the right direction.

When you refuse or ignore your friend’s request to acknowledge their real self, it’s a pretty fundamental rejection. You’re saying, “you’re not worth it.” It’s like telling your friend that you’re allergic to peanuts and they keep offering you peanut butter and jelly sandwiches every time you come over. Quite frankly, if you do that to me, I’m going to decide very quickly that we’re not friends. That’s not me being ‘picky’ — that’s you being a crappy friend.

And who needs crappy friends?


Polyamorous Fairytales Are the Best Fairytales

A very clever writer named Natalie Zina Walschots is putting together a collection of Polyamorous Fairytales that I’m pretty stoked about, and selfishly I’d like you to help support that project so that I can read them (because happy poly fairies are awesome).

The project is in the pre-Kickstarter stage at the moment, with a super-cool Christmas sweater (and t-shirt… and sweatshirt) fundraiser. Now’s your chance to buy one of these original-design shirts (which feature four different triple-stag poly-friendly motifs) and get in with the cool kids.



Visit the Hearts On Our Sleeve page at Teespring to see all the designs, styles and prices. But do it fast! They’re only available for a limited time.

Here’s a how Natalie describes the project: “Everyone is looking for their fairytale ending, and everyone’s perfect happily-ever-after is beautifully, gloriously different. Love is big and strange, plentiful and ever-changing. It unlocks new rooms in our hearts–rooms we had no idea were waiting. Fairytales are similarly strange narratives, full of peril and transformation, and it’s no wonder we turn to them as the template for our own love stories. More than anything else, fairytales have been my guide through my own arduous quests, monstrous riddles, and magic spells to be broken.

But fairytales, for all their curiosity and subversiveness, still often end with a neat pair: a prince and a princess, a queen and a king. A rescue and a marriage and a tidy coupling. However, there are so many kinds of happy endings, so many love stories, that end in other wonderful configurations. Princesses who walk off hand in hand instead of competing for the prince. Companies of knights who lovingly adventure together for the rest of their days. Magicians and nymphs who love liminal space snap moving between them. Witches with wonderful friends who shoo away all their suitors and are thrilled on their own. Kings and queens who delightedly look forward to the occasional visit from the dashing duke two kingdoms over. There aren’t enough of those stories in the world.”

For more info about the project you can visit the Facebook page.

Winners Selected in Book Giveaways

The Goodreads contest is over! I want to thank everyone for entering. In all, 435 people entered to win my cookbook, Compote Is My Jam, and 510 people entered to win my book of essays, I’Mmoral: Poems for Unrepentant Sinners and Free Thinkers.

Goodreads has selected the winners in both contests (again, to be clear, I have/had zero input in the selection of the winners), and I’m pleased to announce that Sharon in Kentucky has won the cookbook, and Shelby in Louisiana has won the book of essays.

Thanks to everyone for entering — I hope you’ll consider seeking out and reading the books even if you didn’t win: All of my books are available at very low and reasonable prices in eBook format at Amazon and other retailers.

Thanks again!


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.


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.




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).


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.


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.


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.


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.


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.


“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?


Things That Are Making Me Anxious Right This Second

(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.