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).*

IMG_0583

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:

NON-DRUG THERAPIES

“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.

DRUG THERAPIES

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.

/rk

*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.

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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

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

How Wasting Money Made Me Happier

Becoming permanently disabled in my 40s was emotionally stunting. After all, when you retire before 50, what exactly are you supposed to do with the rest of your life? We all imagine that when we finally retire we will travel around the world, or study, or sit in coffee shops maligning scruffy teenagers, or do any number of fun things by choice. But the reality is that when that day finally comes, our bodies and abilities may not be so cooperative. Or worse, like myself, you may find yourself forcefully retired before you even achieve any of the things you may have imagined were important to you.

reena coffee outsideThe other unexpected issue with early retirement (or even regular retirement) is, of course, money. Even if my body were able to accommodate my desire to travel to exotic destinations, a retirement pension isn’t much to live on (and a spotty work history due to years of chronic illness isn’t conducive to saving much money).

Faced with overwhelming feelings of plummeting self-esteem and general aimlessness, how do you go about ‘finding yourself’ again?

I suppose it’s not unlike any mid-life crisis — the halfway point in one’s life is difficult for anyone. The difference in my case was simply that so many options felt cut off from me due to physical and financial limitations. At a certain point, though, creating a new identity for myself became less a matter of choice and more a case of necessity. You either evolve or die. I picked evolve.

Things I Did That Were Free:

  1. Stopped saying “Nothing” when people asked me what I did for a living. For what it’s worth, that is a supremely crummy question. There are plenty of people who are not wage earners but still have jobs (stay-at-home parents being one example) and the question makes plenty of people super uncomfortable. In my case, though, I started answering with the other things I did in my life (like writing and acting) rather than de-valuing myself.
  2. Claim my disabled identity. Society really, really wants disabled people to feel like they are lesser-than because they cannot work and/or because they are perceived as broken. By deciding that my disabilities were just part of who I was and that it was society who was disabling me when it did not make basic accommodations, I regained much of the self esteem I had previously lost.

Things I Did That Wasted Money:

  1. Investing money in my writing. I have always written, but finding time to devote to it was always a challenge when I was in school, and later work. Since I have become permanently disabled, I have had bouts of writing, but I’ve sometimes found it difficult to follow through without a dedicated spot to write. While it was initially difficult to justify spending money (without any guaranteed money coming out of it in return) to finance a work space, I have definitely reaped the benefits of that decision — I have completed two more books (with several more on the go) and a multitude of essays. (Obviously I could not have done this without the privilege of a two-income household — I am very grateful for a partner who recognized that my emotional needs were a priority.)
  2. Giving change to street people. I have always been a somewhat private person when it comes to discussing charity. I don’t like to telegraph when I give money because I have it in my head that you shouldn’t expect praise for doing something that is simply a decent thing to do. But I acknowledge that there is value in leading by example. My feeling, when it comes to giving money to anyone who asks, is to give some if you can spare some, and not if you can’t. It’s that simple. I’m not that interested in hearing people’s convoluted reasons as to why they don’t give. If you don’t want to, don’t. But I’ve found that having some change in my pocket every day to give when people ask, and acknowledging them by saying “Have a nice day!” makes me feel pretty great. When you feel like you no longer have a purpose and that you cannot possibly make an impact, the act of helping someone else and connecting for a moment is an unbelievable boost to your self-esteem. I’m not talking God complex here — I’m talking about recognizing the connection we all have as human beings. Even when you can’t make a big impact, the small gestures still count.
  3. Activism. It can sometimes be difficult for disabled bodies to participate in social activism. Not all activist spaces are accessible, nor do we always have the energy to participate in marches or sit-ins. But some of us can make posters, or write online or a variety of other tasks. And it’s vital for disabled persons to be intersectional voices within the feminist and other movements.
  4. Volunteering. Again, accessibility can be a challenge, but there are many ways to volunteer and be part of organizations that are important to you (while being able to set time and job limits that fit within your abilities). Both activism and volunteering have helped me feel connected to the world and recognize the importance of my role in it.
  5. Buying lattes. Other lists will tell you that the first thing you need to do to improve your life is to stop drinking coffee. I think that is a fair assessment. But those same lists will likely point out that you need to allow yourself some form of reward or thing that brings you happiness. In my case, I don’t drink, I don’t smoke, I have to limit my sugar. Basically I have no vices. Buying the occasional latte (with no syrups or whipped cream or toppings) is what makes me happy. It also gives me a destination; a place to go that requires me to be social (if only for a few minutes) and it feels like a splurge. Maybe your splurge is buying a newspaper, or getting your nails done. The point is that sometimes we need an extra reason to get up in the morning or get out of the house. Wasted money, perhaps, but totally worth it.

If we accept the concept that we have to “spend money to make money,” it shouldn’t be so novel that we need to invest in ourselves to find our self-worth.

/rk

Poly and Crippled: When Your Other Partner is Your Disability

Managing your polyamorous relationships obviously becomes exponentially more complex with the more partners you have. Whether you believe in hierarchical relationships (primary, secondary, etc.) or not, there are still times when having to prioritize is inevitable. Everyone has times when they are a squeaky wheel, and as long as it is not part of a pattern of emotional manipulation, I think that’s completely reasonable. After all, if you add kids to the picture, or other situational stressors like death of a family member, or loss of a job, a little extra attention or comfort may be needed that can, in turn, impact the time you spend with other partners. Certainly this is where having metamours that are friendly or understanding with one another’s needs is important, and hopefully there is some give and take and flexibility with scheduling, so that everyone feels their needs are being met fairly.

broken heartBut what if your wheel never stops squeaking? When you suffer from chronic illness (in my case, both physical and mental illness), and you spend much of your time trying to deal with the day to day issues associated with that illness, it can feel virtually impossible to dedicate any kind of emotional energy to multiple partners, never mind one. It is much easier to speak in philosophical tones about polyamory and your theories on ethical non-monogamy than to actually follow through with seeking out and maintaining multiple relationships. The entire process seems impossibly daunting. When your main focus each day is the struggle of getting out of bed, showering (maybe), finding ways to deal with intractable pain, etc., the acts of communication and caring for the emotional and physical needs of another person seem insurmountable. And quite frankly, like work.

It cannot be discounted either, the stress that this puts on the partner of the disabled person. If you are their squeaky wheel, how can they possibly meet the needs of other partners? I have sometimes thought that the solution to this is to seek out partners during periods of stability, but of course as anyone can tell you, finding partners isn’t quite so convenient that they appear out of the woodwork on request (in spite of what some people seem to think on OkCupid). Even if that were possible, who is to say that the new partner would be willing to put up with an over-demanding metamour? It certainly has never been my intention to sabotage my partner’s other relationships, but I cannot deny that it may have occurred in spite of that. When you are dependant upon another human being for many of your daily needs because of disability, it’s a pretty normal reaction to be a) fearful that those needs will no longer be met, and b) filled with guilt over that fear.

A good deal of the stress I have personally felt because of my situation dissipated when I accepted the fact that, at least for now, the only other partner I can manage is my illness. Right now, it requires my time and devotion. Accepting that, and setting some goals as to how I can satisfy some of the needs that it represents (like learning how to manage pain and gaining further independence) have allowed me to slowly get back to being a better partner in my primary relationship. I had spent so much time obsessed with ‘poly failure’ guilt, that I hadn’t been tending to either my partner or my disability. I also spent such an enormous amount of time worrying about whether he was unhappy because he wasn’t seeing anyone else that it clouded my ability to deal with anything else that needed to be tackled in our relationship. It’s hard to build emotional stability when you’re in self-protection mode.

Whether it is due to disability or some other life change, it’s tremendously important to take the emotional time to process and if necessary, withdraw. It’s a natural byproduct of polyamory that we check in with others around us in order to determine their needs and how we can best accommodate them. The problem for some (i.e. those of us who are naturally co-dependent and ‘fixers’) is that we don’t always look inward (or rather, if we do, we do not allocate the time to mend our broken bits the way we try to with others). I know a few people in the community who have declared themselves ‘their own primary.’ There are certainly some who, upon hearing such a pronouncement, might consider that a selfish act, but really, it’s pretty hard to attend to other people’s needs when yours are constantly nagging in the back of your mind. Being your own primary, to me, seems like an excellent way to communicate to others that you declare yourself valuable and hold yourself accountable to your own needs.

Obviously some of this can be mitigated by being honest (and forthcoming) about your own needs so that others can help — but I think it is even more important that we try to figure out ways (even small ones) to help ourselves. There is absolutely no shame in asking for help, but there is also a lot to be gained in terms of feelings of self-worth and independence, by taking control and allotting time for yourself.

The first step is acknowledging that those needs exist. And sometimes, the second is acknowledging that your illness is your life partner — you need to take care of that relationship so you can take care of the others.

/rk

Why Do Gimps Get All the Best Parking Spots?

get well soon

                           Get well never

You would think that being disabled would be the worst part of being disabled, but it’s really not. Being disabled is the most painful part, the most exhausting part, the most depressing part and the most tedious… but it’s not the worst. The worst is other people and how they treat you (or refuse to treat you, as the circumstance may be).

It is virtually impossible to go through a single day without being negatively impacted by the attitudes that society holds towards the disabled. Even if the impact of those negative attitudes is as (allegedly) benign as neglect.

I am disabled because society disables me. (Social Model of Disability)

I have disabilities, and I choose to claim ‘disabled’ as part of my identity, but the reality is that it is society that de-values me and places obstacles in my way which cause me to be handicapped. When I visit an office building or a friend’s apartment and there is no elevator, it is the lack of an elevator that causes me difficulty, not my mobility issues. Because if it had an elevator, those same mobility issues wouldn’t hinder me. Everyone appreciates elevators, whether they have mobility issues or not. They may make the choice to take the stairs, but that is still a choice. The difference for someone with extreme mobility issues is that it leaves them with no choice.

When people balk at accommodations, the elevator is the first example I always bring up. We all appreciate accommodations that make our lives easier, or quicker, or more comfortable. We just don’t always think of them as accommodations.

Public transit is an accommodation for people who cannot afford a car (and is subsidized by municipal government). Grocery carts are an accommodation for those who cannot carry all their groceries in their arms (and are provided free of charge by the store). There are countless further examples, but the point is that everyone, whether they consider themselves disabled or not, has received an accommodation or subsidy in some form throughout their lives. It has made their lives easier, and it is unlikely they’ve ever felt (or been made to feel) guilty about it.

So why is it that the disabled constantly has to justify or apologize for the accommodations which will (at most) equalize the quality of their lives? Why is it that, as a disabled person, I am deemed to have less value than a non-disabled person.

Because I don’t work. (Capitalism and Work Ethic)

Oh Capitalism, this is your fault. Thanks to capitalism, we live in a society where we equate (hard) work with personal value. If you have nothing to contribute financially (because money = value), then you are worthless. Worthless people don’t deserve accommodation. Worthless people certainly don’t deserve charity or financial support, because you need to work to earn money (so again, no work = no money).

Because I am different. (Normalization and Social Role Valorization Theory)

Normal is good. Normal people are those who work, those who are able-bodied, those who do not suffer from mental illness, etc. Being different in any way means that you have less value. Having less value because you are not normal means that you are not worthy of the things that normal people have.

Society uses both of these reasons to not only justify crippling me and other disabled persons, but also as a means to regulate our lives. Social Darwinists cite biological imperative and ‘survival of the fittest’ as excuses to justify segregation and refusal of accommodations or support. Any increases in social services, charity or assistance that do occur tend to be accompanied by an increase in the regulation of disabled persons’ bodies and lives. We are treated like children, forced to beg for financial assistance, account for how we manage our meagre finances, and repeatedly prove our disability. We are perpetually reminded of the burden we represent (and asked to push ourselves to our limits to ‘do our bit.’). We are an itemized list of our disabilities; our other characteristics and talents irrelevant. Disabled people, as non-workers, do not merit a separate identity.

If I worked, even a little, I would have value. (Marxism)

Marxism at least allowed for the fact that disabled people had value even if the output they produced wasn’t equal to the purported ‘norm.’ Marxists saw that work wasn’t a value to be solely idealized on its own, but rather as a means of self-actualization. While this certainly helps justify the inclusion of subsidized work programs within disability support for those who want them, it leaves those who are unable to work without perceived value.

If I can’t work, do I still have value as a human being? I certainly think so.

Delicious Barium

              Delicious barium shakes. Yum.

First of all, I challenge the idea that I don’t work. Everyone works, whether in the traditional sense of earning a salary, or through the performance of labour in other ways. I perform household chores (my partner and I divide the labour such that we can each complete jobs according to our abilities and strengths, like any other couple). I complete the (seemingly endless) list of tasks that are required due to my illnesses and disorders: doctor’s appointments, physiotherapy, medical tests and treatments, blood draws, prescription refills and pill-dispensing. I parent. I do volunteer work. I engage in social activism. I write. All of these things are tempered by my physical and mental abilities — as are all forms of work, for all people. A doctor cannot perform the task of an engineer, and vice versa. That makes neither of them less valuable in their own work, it only reflects a limitation in their abilities.

As for having value separate from work: There are a multitude of reasons why we value the people around us. In terms of people who are not wage earners (beyond the disabled), that includes children, senior citizens, stay-at-home parents, spouses without work visas, students, and more. All of these people contribute to our lives in ways that are not financial, but still have value. Even when we speak of people who are wage earners, when we describe their importance to us, their professions are unlikely to be the first thing that we cite as valuable, but rather their characteristics and what it is that they bring to our lives and the lives of others. A teacher isn’t valuable only because they teach — they are valuable if they connect with their students and create a safe space to learn.

Disabled people are obviously no different than any abled-bodied person in that way: We all possess characteristics that bring value to the lives of those around us. We can be creative, funny, sexy, supportive and clever. We can be nurturing, and we can be nurtured.

The problem with a society that equates value with the ability to work is that it ignores the individual and ends up hurting not only the disabled, but everyone. It is why we have a class system, with one individual being worth more than another solely based on the (sometimes random and unfair) distribution of wealth. Which makes everyone vulnerable to losing their value, whether temporarily or permanently.

When that happens, you could ask a disabled person what that’s like. We’re valuable for stuff like that.

/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