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.
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.
Ultimately, 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.
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 justgood 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.
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 everysingleday.
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?
aka. 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.
Twenty years ago, I reported a rape that didn’t happen.
There are very few people who know this story, and none with whom I could possibly share every detail. Part of that is simply because the more I explain what happened, the less it feels like an explanation and the more it feels like an excuse for something which is clearly inexcusable. I have spent more than twenty years wanting to speak out publicly about it — to out myself and lay myself bare — but have vacillated back and forth. I have desperately wanted to come clean and take responsibility for my actions, but at the same time I have been haunted by the potential repercussions (beyond any for myself) of this kind of confession. The myth that women frequently lie about rape is inevitably falsely reinforced by one woman coming forward (in spite of statistics to the contrary). I don’t want my lie to reflect unfairly on those who have made genuine claims. It has also never been my desire to re-open old wounds for the boy I hurt and whose life I damaged.
But these things have a tendency to eat away at you when they sit unresolved, and although I wouldn’t say that I have forgiven myself for the choice I made, I do understand it more now. That understanding has made it both easier and harder — maturity has given me the emotional tools to dissect and understand the choice I made — that I felt I had to make at the time — but it has also distanced me greatly from the person that made that choice. I cannot imagine doing such a thing today, or allowing myself to be in such a vulnerable position where I felt there was no other option. This means that although I understand it, I find it hard to empathize with it.
THE FOOTBALL PLAYER
When the non-rape happened, I was dating a football player. I was 19 and this was the second serious relationship that I had been in after losing my virginity at 18. My first boyfriend had been sweet and caring, and unfortunately I had been a weepy emotional wreck (undiagnosed bipolar disorder, abandonment issues and puberty were a difficult mix). That relationship lasted three months, after which he dumped me (kindly?) and I was absolutely devastated. When the next relationship came along more than a year later, I grabbed on with both hands and held on tight. Very tight.
He preferred a more arm’s length approach. I was not invited to his house or to meet most of his friends. He didn’t want to meet my friends.
The majority of our relationship involved him rarely returning my calls and coming over to my parent’s house after dark to have sex, which we did mostly in the dark, and during which he never removed his baseball cap. Ever.
Looking back, I have to wonder if any of his friends even knew that he had a girlfriend (was I his girlfriend?), and there is a good chance that he was seeing other girls as well. Things came to a bit of a head when, after repeated requests for him to come to a party with me, he refused and I went on my own.
What happened next wasn’t his fault — if I wasn’t getting what I needed from the relationship I should have just ended it (that seems perfectly logical now, of course, but teenagers don’t often have the emotional maturity to go along with their sexual explorations). I was hurt and needed validation.
THE BOY (AKA. THE FALSELY ACCUSED)
I arrived at the party feeling severely depressed, but determined to solve that problem by spending time with my friends and consuming large quantities of alcohol. I no longer remember the exact circumstances of meeting the guy I would cheat on my boyfriend with (for reasons that will become apparent later, my memories of the event ended up being so distorted and tampered with that I blocked out a lot of it). Somehow he was there, and then he and a couple of my girlfriends and I headed to a corner store to buy some snacks, and then we returned to the party, after which he and I started fooling around). He was (in my eyes at the time) the mortal incarnation of a Greek god. He was beautiful. Tanned skin, beautiful wavy hair and muscles. But more importantly, he seemed completely blown away by the attention I was giving him and he reciprocated wholeheartedly.
This was, understandably, a pretty big boost to my self-esteem. He wanted me so much and seemed so hungry for me, and I was so wounded by rejection that I couldn’t get enough. It didn’t register with me at the time that part (or all?) of that hunger was less a function of my irresistible desirability and more a reflection of his age.
He was 15. He was a virgin.
Not only was he 15, but he had just turned 15 that week. He was in grade nine and I had already graduated from high school.
This did give me pause. Of course it did. But I made all the rationalizations that I am sure men make of underage girls who they convince themselves ‘look older’ and are ‘mature for their age.’ By law in Canada, it was legal for us to have sex. Barely.
In any case, we did not have sex that first night, nor even when we met up again the next day. I am not certain that was even my goal. It was a bit of a runaway train that, of course, he was going to ride as far as he could, and that I was feeling less certain about the more sober I was. We eventually went home to my parents house and did, finally, consummate what seemed inevitable.
It was awkward and absolutely not horrible physically, but mentally I realized (during) that I had done a very, very stupid thing. I knew I couldn’t continue seeing him (regardless of what happened with my boyfriend) — enough time had passed that I had actually spent talking to him to realize that, while sweet, he was a child and we had nothing in common. He was beginning high school and I was going to head off to university. I had just been his first sexual experience and I had no idea how to deal with the situation in a way that wouldn’t destroy him.
So of course I pretended everything was fine and waited until he called me the next day and did it over the phone.
When my boyfriend found out, he was angry, but didn’t yell or hurt me in any way. He didn’t even dump me. He just insisted I tell him everything about the boy and his name. I asked him if he was going to hurt him. He said no. I told him not to. He said he wouldn’t. I didn’t believe him.
TW: Trigger Warnings for talk of rape and abuse after the fold…
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.
The 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:
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.
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:
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.)
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.
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.
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.
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.
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.
But 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.