Tags: chronic illness, I didn't work this hard just to get married, misdiagnosed the search for Dr House, misdiagnosis, Nika Beamon, single and sick
Copious Readers, as you can see from our previous post, we are currently exploring the topic of singles with chronic illness. As we have discussed before, unmarried people face a good deal of discrimination not only socially, but economically as well. Social security, health insurance, retirement savings plans–all of these are governed by laws that can very negatively impact singles. So we asked ourselves, what about unmarried people who have severe health problems? How would all the legal and financial discrimination affect them?
We would love guest posts on these (or other) topics from singles who are battling difficult, ongoing diseases or disabilities. But in the meantime, we are pleased to introduce you to an upcoming new memoir written by Nika Beamon, who is the author of I Didn’t Work This Hard Just to Get Married: Successful Single Black Women Speak Out and a chronic illness survivor herself. She is available for speaking engagements about her books and related topics and can be contacted at firstname.lastname@example.org. For more ways to follow the book, see the end of this post.
Misdiagnosed: The Search for Dr. House
WHO SHOULD READ THIS BOOK:
Anyone who has a chronic illness. (Para 1)
Anyone who has cared for someone with a chronic illness. (Para 2)
Anyone who has treated, or attempted to treat, someone with a chronic illness. (Para 3)
Anyone who has not had a chronic illness. (Para 4)
Anyone who influences health policy in the U.S. or other countries. (Para 5)
WHO SHOULD NOT READ THIS BOOK:
The faint of heart.
SUMMARY: Beamon writes raw. Her memoir chronicles her journey from a hospital-worthy hemorrage on a first date to scorching headaches to intestinal polyps to a 104 degree fever and an ongoing combination of all those symptoms, plus many many more. You the reader make the scary journey along with Beamon. Neither you nor she knows what’s wrong with her, or what freaky thing her body might do the next day. Not until the very end of the book.
1. Anyone who has had a chronic illness–even one that is fairly easily diagnosed and stabilized–has probably experienced at least one Doctor with Attitude who avoids eye contact and only half-answers your questions, especially if he or she can’t figure out what’s wrong with you. Nika meets many such health care professionals. Survivors of mysterious chronic illnesses will recognize themselves in her dogged search for someone, anyone, who can tell her what’s wrong.
2. Anyone who has cared for someone with a chronic illness will identify with Beamon’s boyfriend, Bryce. Beamon paints a stereotype-shattering picture of Bryce as both dedicated caregiver and thoughtless philanderer–at the same time. Bryce is a living metaphor for any long-term caregiver who (hopefully) loves or respects their “patient” but eventually starts to feel the strain of constant medical jargon, pills pills pills, a forlorn attitude by the sick person, and maybe, in extreme cases, the physical stress of helping the ill person move or medicate. This frustration doesn’t mean the caregiver has stopped caring about the sufferer. It just means the caregiver struggles with conflicting emotions, the confusing kind that probably encouraged (but was no excuse for) Bryce’s sleeping with other women (a habit he’d had even before her sickness). Yet he still provided invaluable support to Beamon. . . But what if she had been socially single, you ask? Well, her parents often stepped up to help as well. If she had not had a nuclear family, she would have had to rely on friends, and no matter how much her friends loved her, it might have been harder for Beamon to accept extreme amounts of help (the kind she needed) from them, because we’re just not conditioned to think of friendship that way. (Note I’m speaking my own opinion here, not referencing anything Beamon says in her book.)
3. Anyone who has ever treated, or tried to treat, someone with a chronic illness, especially a mystery chronic illness, will recognize themselves in at least one of the puzzled doctors Beamon seeks out for help–internal medicine practitioners, surgeons, gastroenterologists, neurologists, and more. They give her endoscopies, colonoscopies, pills pills pills, and more than one tube up her nose. Most of the doctors fall somewhere along the scale of mildly assholish to major prick, until. . . but I don’t want to spoil the story for you.
4. Anyone who has NOT had a chronic illness will learn from this book to feel a little less sorry for themselves when they have some dumb cold. Heck, I myself have a fairly serious chronic illness, but even I flip through the Misdiagnosed manuscript whenever I need a mental ladder out of one of my sludgy wells of self-pity.
5. Anyone who influences health care policy will–hopefully–be horrified at how much Beamon had to struggle, as detailed in all the paragraphs above. They will–hopefully–be horrified at how often she had to take her health into her own hands, seek out her own doctors, and research her own condition(s) and symptoms. Fortunately she was able to fight this battle off and on throughout her sickness–but many chronic illness survivors are not so lucky. They can’t work and must rely on disability, or they don’t have insurance, or—or they’re single, and these problems become amplified for them. Look at the crowded rooms of the startling public hospital in which Nika accidentally stays for several days; it is bare-bones, not super hygenic, and even possibly dangerous (for example, her wallet is temporarily stolen). This is where the unluckiest chronic illness victims end up–if they are poor or under-insured. Perhaps, given the legal and financial discrimination against singles, more unmarried people end up in substandard facilities than do coupled people. This study has not been done, but it should be.
Hopefully Beamon’s book will be one step towards opening the dialog about singles with chronic illness. Read it, people, and start talking! Thanks!
P.S. Keep up with Nika and Misdiagnosed here:
Photo credit: garret_33
Help! I Need Somebody! (A guest post) April 11, 2014Posted by Onely in Bad Onely Activities, Guest Bloggers, Guest Posts, Your Responses Requested!.
Tags: friends and family network, single and sick, single with chronic illness, support system, writing about chronic illness
Copious Readers, welcome to another installment in our latest series about singles with chronic illness. Today we are pleased to introduce a guest post by our reader Bea, who ponders the meaning of “friends and family” and their role in the life of a single person with chronic illness.
Help! I need somebody!
Ever so often I stumble over this one expression that triggers kind of an allergic reaction in me. Like a mental allergy, even though I swear I can nearly feel it physically. It makes me upset and my mind starts to go in never ending circles, consisting of negative thoughts, hopeless thoughts à la „how is this ever gonna change?“. And I stumble over this expression all the time, in conversations, magazine articles, TV shows and…in self-help books, which is the last place where I wanna be confronted with depressing thoughts, seriously.
The expression I’m talking about here is this: „getting support from your family and friends“. Which is supposed to be something good in your life, something soothing, empowering, something to rely on. Especially when you are in a crisis, like losing your job or your home or an emotional crisis or getting sick. Like so sick that it changes your life, temporarily, or in case of a chronic illness, permanently. Which in itself is an enormous challenge, because a chronic illness alters your life in so many ways. It can be compared to a grieving process, accepting changes in your body, maybe restrictions in mobility, maybe constant exhaustion, maybe chronic pain. And if this illness is something totally new in your life, there’s a lot of things that need to be said good-bye to, things that you remember you were able to do before, but now can’t anymore. The good thing is, there’s also a lot of beautiful moments during and after the grieving process and the human psyche is definitely something magical, being able to adapt, to survive and build new things.
But one thing is for sure, dealing with a chronic illness all on your own is not advisable, the one thing you absolutely need to adapt to is the fact that you need help. And not only professional help from doctors or therapists etc., but in your personal life. Which is what brings me back to this expression that I don’t like, this “family and friends” thing. What I mostly don’t like about it is the subtle distinction between the two, the meaning behind the words. Because the conventional understanding of family is a biological – or at least legally adoptive – family, meaning your parents, grandparents, siblings, aunts and uncles etc. The only way to extend this kind of family – in a conventional understanding – is, if you fall in love with somebody, then marry, maybe have kids, and by this way you build a new “family branch”.
But what if you don’t have this? What if you don’t have a family, never had one or lost it or had to cut all contact out of self respect or the will to survive? And what if you don’t have a romantic relationship either, a so-called “life partner”, and your life works quite well without one? But that’s what the “friends” part in “family and friends” is for, isn’t it? Yes, that’s what I thought, too, and I’m a big advocate for families of choice, for people building close-knit ties without a romantic or biological connection behind it. The problem is I still feel quite alone with it most of the time, with this wish of changing the status quo. And I feel even more alone in moments when I am depending on somebody’s support.
Because way too often I experience that people secretly still have this hierarchy in their head, this clear distinction between family – and – friends. And yes, I do understand that people only have a certain amount of energy, that they can’t support everybody, that they have to take care of themselves, too, after all. But it bugs me that there still seems to be this huge self-evidence of who comes first and who second. It bugs me in many ways, if for example I see friends circling their life around each new “life-partner”, no matter for how little time they’ve known this person. And it bugs me, if people don’t even question the fact that they spend their vacation always with their “loved ones”. And it bugs me, of course, to then get pity from those people, because I don’t have this kind of life, not even asking if I want or need it, pressuring me into something that I actually don’t want for myself. Honestly, I love being on my own!
But what I do need is help and support, if I like it or not. And it will become more and more in the upcoming years, since my chronic illness will result in me sitting in a wheel chair at some point. And I admit that right now, I am still in the midst of my grieving process, and maybe I am too pessimistic and bitter and single-minded at this point in my life. But, of course, what’s behind this pessimism is an unfathomable amount of worries and fears. One of those fears is that my lifestyle of choice, being a single and being without my biological family, will not be compatible with this new situation. So I guess what I need the most right now is to know that there’s more people out there who have an allergic reaction to old conventions and who don’t give up working against the status quo.
Hi, Christina here again. If you are a single person with a chronic sickness, feel free to write to us at email@example.com to share your story. We are also looking for good ways to say “singles with chronic illness” with fewer syllables (“sick singles” already having been nixed as a possibility). Some of us brainstormed up Single and Surviving Sickness, Single and Sick Survivors, Single and Sick but Surviving–all of which condense to the handy acronym SaSS. But acronyms aren’t everything so we still need your help to come up with some non-tongue-twisting terminology.
Photo credit: kr8v
Tags: Kindle Direct Publishing, singles chronic illness, Spectre and the Sickness
1 comment so far
Copious Readers, welcome to our very first post that has nothing to do with being single! We have written over 400 posts so far and each and every one has directly pertained to some aspect of being single, either socially or legally (or both). Not today!
I wrote an all-true essay about ghosthunting and Lyme Disease called The Spectre and the Sickness, and I put it up on Kindle Direct Publishing. For only a dollar, you can find out how paranormal investigations and Lyme disease are very much alike. Please check it out. Any feedback is welcome.
Anyone can write something and put it on Kindle Direct Publishing, and I highly recommend you do. Trust me, it’s worth all the trouble of wordsmithing–if only because the Kindle program for making your own cover art is so damn fun.
So do it–write about social or legal discrimination against single people! Write about silly things non-single (or unenlightened singles) have said to you about your single status! Write about being single with a chronic illness (our current favorite topic here at Onely)!
Oops, I guess I have turned this post into one about marital status after all. Quick, undo undo: Write about kittens! Write about hot air balloons! Write about the crisis in Ukraine! Write about intestinal polyps! (A topic we, too, will address soon in an upcoming post–and don’t worry, by then we will be back to writing about singleness again.)
Seeking Sick Singles March 17, 2014Posted by Onely in Your Responses Requested!.
Tags: sick and single, singles blog, singles with chronic illness
We are doing this for two reasons: One, a friend of ours is considering a possible documentary about singles with chronic illness. Two, just because we at Onely are interested in how single people live with chronic illness, and we hope to talk to a range of people meeting these criteria. If you would like to be considered for the (still hypothetical) documentary, or would like to tell your story outside of the documentary, please contact us at firstname.lastname@example.org. (Or leave a comment below.)
We are also seeking another term than “sick singles” (too pathetic and, what’s more, a little pornish-sounding) or “singles with chronic illness” (too unwieldy). Terms that distill into catchy acronyms would be great.
Photo credit: Zoom_Artbrush
Tags: #endmaritalstatusdiscrimination, #SinglesBlogfest, #UnmarriedEquality, independence, interdependence, singles blog, singles blogfest
add a comment
This July 4th, as the U.S. celebrates its Independence Day, Onely is joining other pro-singles’ bloggers in a Media Saturation Event to celebrate the independence – and interdependence – of the single life (you might remember our participation in this blogfest about the cost of single life, back in April).
This time, we’re asking you to write, vent, question, and tweet just what In(ter)dependence means to you.
And by “you”, we mean LOTS of you. We at C.L.U.E. (Communications League for Unmarried Equality, consisting of Onely; Bella dePaulo, PhD; Spinsterlicious; and Cindy Butler of the group Unmarried Equality) have worked hard to assemble the BEST and the BRIGHTEST and LOUDEST voices in the progressive singles’ community. So if we haven’t just found you, then join us! If you don’t have the time to compose reams of masterful text about what In(ter)dependence means to you, then get on the Tweet train with these tags: #unmarriedequality and/or #singlesblogfest and/or #endmaritalstatusdiscrimination. Sprinkle them like fairy dust into your tweets about singleness and in(ter)dependence. (Extra credit if you can combine your hashtags with Haikus!) And if you *do* write a post, make sure to send the link to email@example.com so that we can give you credit.
And now, here are Onely’s deep thoughts about In(ter)dependence:
There are plenty of stereotypes about what it means to be single, and one of the most common is that we “have it easy” because we aren’t responsible for, or to, anyone else. If only! You might even say that the category “single” is an oxymoron – for it’s impossible (or at least unpleasant) to live in this world without relationships of some kinds.
This interdependence, we believe, is something to be celebrated. But when we’re single, we are often (sometimes. . . occasionally. . .) expected to celebrate our independence. Songs have been written about this phenomenon (think Aretha Franklin’s “Respect” and “Stronger” by Kelly Clarkson). Never mind that this independence is, more often than not, portrayed as a response to previous romantic relationships! Indeed, here at Onely, we’ve made it a point to emphasize – and celebrate – the strength and resilience required of single people in the face of heteronormativity, amatonormativity, and matrimania.
The truth is, though, no matter how strong a single person is – no matter how truly independent any one of us might be – we are supported and strengthened by our relationships with others. Life would be pretty lonely without these relationships. But there’s little space in our culture to celebrate relationships that aren’t SEEPie (Sex and Everything Else Person) relationships, and so it’s easy to lose sight of the many “other” significant relationships that help us feel human.
This blind celebration of independence – oftentimes at the expense of recognizing the value of interdependence – trickles down to our identities as single people. If we have anything to be proud of, Western culture suggests, it should be our so-called “freedom,” our “lack of responsibility” to others, and our apparent “mobility.” We should be. . . Movie Cowboys!
But this attitude devalues the many kinds of relationships that nourish us, and it ignores the reality of our daily lives (income issues, sick family members, roof rot, and, perhaps most challenging, raising a child as a single parent). When we lose sight of the significance of the many different kinds of relationships we enjoy (financial advisor, aunt who cares for her sick niece, the kind coworker who also does insulation and tile work, the neighbor who loves to babysit) it becomes easy to define ourselves, as single people, as somehow weak or lonely.
And that’s a shame. Because there’s something special about being single – and we like to call it Being Onely.
How does in(ter)dependence
Influence your life?
Remember: #unmarriedequality and/or #singlesblogfest and/or #endmaritalstatusdiscrimination.
— Lisa and Christina
Photo credit: Listen Missy!
Single? Blogfest Explains How to Get Screwed 1,000 Times! April 15, 2013Posted by Onely in As If!, Bad Onely Activities, Food for Thought, Guest Bloggers, Guest Posts, Marital Status Discrimination, Singled Out, Singles Resource, Take action, Your Responses Requested!.
Tags: #SinglesBlogfest, #UnmarriedEquality, Atlantic Magazine, bella depaulo, Christina Campbell, Cindy Butler, Eleanore Wells, Marital Status Discrimination, singles blogs, The High Price of Being Single, Unmarried Equality
Marital Status Discrimination: Today, Onely joins forces with dozens of other bloggers to highlight the problem of Marital Status Discrimination. Why? Because on Tax Day, Uncle Sam picks the pockets of singles at the same time he’s rewarding couples for getting married.
So what? So this: The U.S. government–a democratic government, a government “By the People and For the People” and all that–discriminates against fifty percent of its population: unmarried people. Our federal code alone contains over 1,000 laws where marital status is a factor, and in most cases single people lose out.
Because this phenomenon was a problem with no name, we at Onely christened it “institutionalized” Marital Status Discrimination. In January we made a big slam-dunk stink about it in The Atlantic.
The Million-Dollar Difference: According to our very conservative and basic calculations, a single person earning $80,000/year could easily pay at least a million dollars more over her lifetime than her married counterpart, based on only a few of the most discriminatory laws (such as Income Tax, IRAs, and Social Security).
What’s more, our hypothetical scenarios did not consider state laws, nor the many ways Marital Status Discrimination shows up in corporate policies–such as when singles pay more for all sorts of insurance. These factors could easily push the million-dollar figure higher. Much higher.
But money isn’t everything: That’s why our government has thoughtfully provided other laws that don’t impact single people’s pocketbooks. These laws instead impact single people’s peace of mind. For example, as we described in 2010 on Psychology Today, an anti-stalking law promises protection to the victim’s spouse. Phew! But a single person being stalked is offered no such additional protection for a loved ones.
Any stalker who does his research (and we imagine this is all of them) would know exactly whom his stalkee loves most. R.I.P. Grandma; if only you had married your grandson maybe there would have been cops by your door when his stalker came calling. . .
The U.S. Government thinks being unmarried means: a life free of connections and cares, and full of discretionary spending. Unfortunately, even if this were true (and we at Onely fervently wish it were), no society is at its best when half its members are treated differently from the other half.
So let’s get started obliterating Marital Status Discrimination! Our first step is to. . uh. . . We will start by. . . ahem. . . Our next move should be. . . um. . . Well, as you can see, while we at Onely are skilled at pointing out these problems, we aren’t so sure what we should do next.
So, Copious Readers, here’s where we need your help: Now that we’ve gotten the dialog started, what do you think our “next steps” should be? How do you think we should take action (and by “we,” we mean the collective blogosphere standing up for single people everywhere)? What subject matter experts are best positioned to spread the word or propose legislative change? Do you know tax professionals or legislators friendly to our cause? (Or can you convince them to embrace our cause?)
Please share your insights and spread the word: Comment below. Or tweet #UnmarriedEquality and #SinglesBlogfest. Or share this article on Facebook!
If you have more questions about Singles Blogfest, please write to Onely@onely.org or to firstname.lastname@example.org. Huh? Clue? Yes:
The Communication League for Unmarried Equality (CLUE):
We at Onely were not the only ones who instigated this effort. We were honored to have had lots of help from three of the most active voices in the progressive singles’ movement, who jumped on board the Singles Blogfest project with unparalleled enthusiasm and expertise:
Thanks Copious Readers, We Love You!
Photo Credit: The Atlantic.com
The Worst Singlism Ever (And We’ve Seen Some Bad Stuff)–Protest It! February 9, 2013Posted by Onely in As If!, Celebrities, STFU Celebrities, Your Responses Requested!.
Tags: David France, Ed Koch, new york magazine, singles blog
1 comment so far
Copious Readers, get your pens on! We need to write letters to the editors of New York Magazine, which published an article by (supposed) social-justice advocate David France, wherein David France says single people–specifically, New York mayor and “lifelong bachelor” Ed Koch–are heartless.
In the article, “Ed Koch and the AIDS Crisis: His Greatest Failure,” France says that in the course of his research:
That fact [that Koch “never coupled”] stood out above any other as a probable explanation for why he seemed to lack even the faintest stirrings of empathy when the AIDS crisis came. (more…)
Is There a Place for Practical Marriage? February 6, 2013Posted by Onely in Food for Thought, Your Responses Requested!.
Tags: international relationships, marital privilege, marriage for practical reasons
Christina and I are on record saying that neither of us is interested in getting married. However, our Copious Readers know that we are not against marriage per se; rather, this blog is devoted to the deconstruction of marital privilege wherever it exists – in our society, our institutions, and our laws.
Copious Readers – especially those of you, like me, who have never planned to get married – I am curious about your opinions on this question: In what situation would your resistance to marriage crumble?
To speak personally, I have never looked forward to getting married – even as a child, this was not a life event I imagined for myself. I did look forward to falling in love and experiencing intimate relationships – and I have had these experiences, among many others that were equally significant.
But the question I have now stems from my current life outside the U.S., where marital privilege is equally ubiquitous. In my location, marriage is not only connected to cultural expectations, as well as the relatively mundane financial and social benefits, but it is also deeply connected to the ability to live with those you love – to be a part of a relationship that is recognizable according to the eyes of (international) law.
When I lived in the U.S., in a practical sense I thought I would never need to marry in order to enjoy and maintain a relationship. That’s not to say that marital privilege wouldn’t affect my life in profound ways: If I were in a relationship in the U.S., my partner and I would need to take extra steps to ensure that our partnership, and the rights we wanted to give one another (in terms of health care decisions, property, and other benefits), was legally recognized. And although the extra steps would cost us time and money, the important thing is, it would be possible to take those extra steps
But what if you find yourself in a serious relationship that crosses national borders? At what point should the practical benefits of marriage override one’s resistance to the institution? Let me give you two hypothetical examples, based on real situations that we’ve been told about by our friends, to illustrate how important the question is: (more…)
Single Women: So What If They’re Over Fifty? January 5, 2013Posted by Onely in As If!, STFU, Your Responses Requested!.
Tags: ageism, cougar, demeaning terms for singles, demeaning terms for women, lookism, looksism, sexism, singles blog, singles sexism, singlism, SMOFTY, spinster stereotype, SWOFTY
So apparently now there is yet another term to describe women who behave in a certain way: Before it was Cougar, meaning an older woman who dates younger men (implication: these women must be preying on younger men, because why would the guys be attracted them of their own accord?) . Now according to this article flagged by our reader Iolanda, as well as other articles, we have SWOFTY. This means a single woman over fifty.
Copious readers, is this offensive or empowering to women, and particularly to single women? I say offensive, and here’s why:
Where is the term for single men over fifty? A Google search for SMOFTY returned the result: Did you mean SWOFTY? . . . Um, no, sigh.
And there’s more: The term SWOFTY markets itself as a badge of honor for single women, but really it objectifies and classifies women in a three-for-one deal: according to their relationship status, gender, and age. It’s the same old sexism, singlism, and ageism that has been going on in most cultures since forever, just re-labelled. Even the fact that we get surprised by the idea that single women over fifty can be vibrant and happy — so surprised that we have to give them a name — shows just how ingrained the stereotype of the drab spinster is. It’s a stereotype we need to talk in full adult words about, not cutesy acronyms that keep reminding people how the existence of happy single older women is surprising.
And no, SWOFTY does not do anything to increase the dialogue about or dismantle the spinster stereotype (more…)
Can Couples Advocate for Singles’ Rights? December 30, 2012Posted by Onely in Food for Thought, Take action, Your Responses Requested!.
Tags: couple communication, singles advocacy, singles blog, singles versus couples, singles' rights, singlism
For more than four years now, Lisa and I have spent a good deal of time objecting, advocating, railing, protesting, blathering, and even (to our shame) name-calling, all in the name of singles’ rights. We’ve been doing it every since we realized that, at the time, all pro-singles writing said it was GREAT to be happily single, but only because it made you more appealing so you could get a mate.
Lisa and I, two single women in our 30s, thought that was stupid. What if, we proposed, it was great to be happily single, period? We were both happy, and single, and didn’t care whether we’d find a mate or not. So we started this blog, which has since been quoted or cited in several major print and online publications (and I say that only as an example of how vehemently we pushed our topic in people’s faces).
Our question to you, Copious Readers, is: would we, could we, have ever had the same revelation–and the same work ethic–if one or both of us had been coupled? Or by extension, can a coupled/married person ever advocate for singles’ rights as passionately, accurately, or extensively as an unmarried or socially single person? If yes, under what circumstances? If no, why not?
By singles’ rights, we mean that the U.S. government ought to stop discriminating against half its adult populace. We call this institutionalized singlism.
By singles’ rights, we also mean that people–regular people like you and Lisa and me–need to recognize that it’s not acceptable to treat single people like losers in the game of life. (“You’re not married yet? Awww.”) We call this cultural singlism. Examples are all over this blog and all over the blog of social scientist Bella DePaulo whom I linked to above, so I’m not going to retell the stories here. (I will give you some keywords though: Immature. Selfish. Desperate. Cats. Dead. Eaten by.)
Onely’s opinion is that anyone, aaaaaanyone, with an open-minded, critical-thinking type of brain, plus a (more…)