Don’t Call It A Vacation

10 September »

I am taking a break from blogging for a while — not quite sure when I’ll be back. It’s not that I don’t want to write, but more of a time management thing. I have a lot going on, mostly good stuff, but it keeps me busy. Point being it’s not a vacation, but me trying to get my life in some kind of order.

I’m not really going anywhere: you can still comment on my posts, I’m still active on Facebook, and I still answer emails.

Also, League of Mortals — the most honest novel about illness you will ever read — is still available. Click on the link in the sidebar for more info and the first chapter.

 

 

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Where We Donate vs. What Diseases Kill Us

28 August »

I swiped this cool chart from Julia Belluz’s Vox article on the ice bucket challenge — subtitled “Viral memes shouldn’t dictate our charitable giving”.  I would have included the graph in my post on ice bucketing, but I only saw it today.

Keep in mind there are major causes of death missing from the chart, like stroke and accidents. It’s not that breast cancer is the fourth-worst killer — lung cancer and colorectal cancer kill more people — but that breast cancer raises tons of money where stroke and accidents don’t.

Donating.vs.Death-Graph.0

The only problem I have with the article is that Belluz takes for granted that the various charities do anything for people suffering from the disease. She quotes William McKaskill: “With ALS, he said that $56,000 would provide one quality-adjusted life year to a sufferer. On the other hand, he said, ‘the same amount of money could provide 500 quality-adjusted life years if you give money to bed nets for malaria.’” That is probably true, but it is not necessarily true that if you give $56,000 to the ALSA, that the money will be spent on an ALS patient.

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Cars Kill More People Than Pain Meds

25 August »

It is simply not true that car crashes kill more people in this country than prescription pain medicine overdoses do. I keep seeing this factoid pop up, and it keeps being wrong.

Here it is on BoingBoing, in the headline; here it is on WaPo’s Wonkblog, first paragraph. Here it is on Kevin, MD — and again on Kevin, MD.

Wrong, wrong, and doubly wrong.

The most recent data available (2010) show that only 16,551 deaths were due to to prescription narcotics. In that same year, 32,885 people died in traffic crashes. Rx narcotics were just over half of car crashes. There. Done. Solved.

It is probably true — and it was in 2008 — that poisoning kills more people than car crashes, but that includes all poisonings, including illegal drugs.

Drug poisoning accounted for 36,500 deaths in 2008, of which 25% were attributed to drugs other than rx narcotics. About 35% of drug poisonings did not have an identified drug; even assuming that all those deaths were also due to rx narcotics, that’s about 27,735 deaths total. Traffic fatalities in 2008 were 37,423 — more than drug poisoning, and still significantly more than the worst-case math for rx narcotics.

So poisonings kill more people than traffic fatalities, of which drug poisonings are the major share, of which rx narcotics are definitely a large share and probably a major share.

But there is no evidence at all that more people in the US die each year from prescription narcotics than car crashes. Don’t believe it for a minute.

For more on why this comparison is important, check out my post on the Magic Number.

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23&Me & me & IBD

24 August »

I joined the 23&Me IBD study, and thought I would explain why. Short version: it’s okay to participate, but don’t expect too much.

Before we get to that, I want you to memorize something:

Genes Are Not Destiny

Try saying it over and over. Got it? Thanks.

23&Me & Me

I’ve heard of 23&Me before, but I don’t think genetic information is really useful to the average person. 23&Me’s business model seems based on the idea that genes tell us something fundamental about who we are — which is false. Has anyone not seen GATTACA? Check it out.

When Facebook friends pointed me to the IBD study, I was even more skeptical. Still, I read through 23&Me’s website and legal forms, and decided it was okay to participate. I have done a few clinical trials, and the 23&Me waivers read about right. It looks like the company is putting some effort into making this serious research.

There are real risks, however: namely, that your genetic information will be compromised. 23&Me acknowledges this. Most of my friends are open about their illness (though I was able to sign up for the study using my blogonym), but the possibility of breach is very real, and very serious, in ways that we as a society aren’t quite ready to deal with.

For example, I am pretty sure I have the gene(s) for alcoholism. An insurer or employer might use this information against me, if it were public knowledge — even though my guts can’t handle booze at all. The laws against this sort of thing are pretty weak. 23&Me is doing what it should to protect your information, but if you would be at all vulnerable to having your genetic information made public, don’t participate.

23&Me & IBD

If you do participate, keep your expectations modest. We already know a good deal about the genetics of IBD. The IBD Genetics Consortium has already identified 163 genetic associations for IBD, from a pool of 37,000 patients. 23&Me’s target is only 10,000 patients. What’s more, those are probably more rigorous than the 23&Me project: there is only so much you can do with self-reported information, without clinical information like blood work, biopsies, and endoscopy.

We also know a good deal about how the disease is passed through families — which the 23&Me study does not address. Participating in the 23&Me study will not tell you anything new about whether your kids are going to have IBD.

Keep in mind that IBD is not all genetics. A rough estimate is that IBD is 50% genes and 50% environment, but we still don’t know much about the environment half. The Hygiene Hypothesis is appealing, but needs a lot more work. This is, again, why it’s important to understand that Genes Are Not Destiny — the genes don’t make you sick without the triggers.

In fact, the more we learn about genes and the body, the less important genes are to our destiny. In recent years, scientists have made made astonishing discoveries in epigenetics — that is, the study of what affects gene expression. Genes turn on and off, depending on external inputs like food, vitamins, activity, whether you smoke, what medicine you take, how much you sleep, and so on. Genes Are Not Destiny — to an extent we didn’t understand even ten years ago.

23&Me & Drugs

So what good is the 23&Me study? Well, if you participate, be sure to have a list of all the medicines you have ever taken for IBD. The survey question spends a lot of time asking about those drugs — which I think is the real point of the study.

One of the problems for IBD treatment is that not all patients respond the same to the various treatments. Some people with CD have good results from Asacol, some people don’t. Some people with UC  have good results from Remicade, some people don’t.

One of the things going on is that IBD is a probably a cluster of diseases, beyond the two we have names for. Each disease in the cluster probably has a different mechanism for inflammation, which is why some drugs work on some people, but not everyone. The fact that there are 163 genes associated with IBD supports this: you don’t need all 163 genes to be messed up, probably just a few key genes, and those messed-up genes might vary a great deal from patient to patient.

My understanding is that we do not know, at this point, how those genes correspond to the various medications. We know there are genes associated with IBD, but not what genes make Remicade more successful in some patients. If there are clear genetic distinctions in how patients respond to various medicines, that would be useful information. That would be valuable information, especially, if you were a company looking to cut into the IBD market with two new drugs — that is, a company like Pfizer.

23&Me & Pfizer & Billions of Dollars

Pfizer has so far been cut out of the surprisingly lucrative IBD market — $4.7 billion just in the US – but they have two new drugs in the pipeline; tofacitinib and MultiStem. It’s expensive to develop new drugs, and the market is getting crowded, so Pfizer needs to know if they can find a hole. MultiStem, in particular, is likely to be crazy expensive, so Pfizer has to be confident people will pony up for the treatment.

The thing is, a survey of 10,000 patients would be valuable even without genetic information. Knowing whether there is a hole in the market for their new drugs is key to their bringing it to market. If there are genetic markers for patients who would benefit from those drugs, so much the better, but the genetic stuff is just a bonus. This helps explain why the project is limited to only U.S. patients. It might cost Pfizer a couple million dollars, but that’s an easy hedge against the billions they could lose if their drugs flop.

So the 23&Me study, as far as I can tell, is mostly a market analysis for Pfizer. If you’re a patient who chose to participate, that’s okay — especially, if like me, you’ve burned out on almost every legal treatment for IBD. We want more drugs on the market, even if we don’t plan to use them. Just keep in mind that the study is not likely to produce any real breakthroughs where the basic science of IBD is concerned.

23&Me & You

If you participate, keep your expectations modest. This study will not cure IBD.

Also keep in mind that genes don’t determine your life. When you receive your info from 23&Me, don’t go digging through it looking for bad news. I plan to glance at the ancestry info, but store the rest until a doctor asks to see it. For all we know about genetics at this point, 23&Me’s reporting might be just as valuable as a fortune cookie. Don’t get too excited.

One last time, Genes Are Not Destiny.

 

 

 

 

 

 

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Don’t Ice Bucket

22 August »

I was away from my computer for a while, and returned to find this ice bucket thing blowing up. There are a couple reasons why it’s a bad idea — one obvious, one a little more complex.

The obvious reason: diving into the latest Internet meme is a really mindless way to pick a charity. And in fact, the ice bucket thing started out with no specific charity; nominees could pick their own. ALS is no more worthy than any of the thousands of charities that could have benefited from this meme, and maybe a lot less worthy than most.

This brings me to the deeper reason not to participate: I wrote a few years ago about the problem with disease charities, that they put research ahead of the real needs of people living with the disease on a day-to-day basis. This is true for almost all disease-specific patient organizations, but — it turns out — especially true for ALS.

Case in point: Anthony Carbajal — who has been diagnosed with ALS and made his own ice bucket video. It’s really poignant, and you can tell how scared Anthony is. The fact that people are raising money for the ALS Association– the patient org for ALS — means a lot to him, which is great.

The problem is: it doesn’t do a lot for him.

Look at the ALS Associations financials: last year they raised $30 million, of which $7 million went to research and $5.2 million went to patient and community services — less than half of the money they raised. The latter category almost certainly means money spent for support groups and things like that, and probably zero for actual direct help for patients. Organizations like the ALSA don’t do that, generally.

Meanwhile, Anthony has a page on YouCaring.com, where you can give him money. Anthony may or may not already be receiving SSDI, but if he is, his healthcare is paid for. In 2001, thanks the ALSA lobbying, Congress passed a law that allows ALS patients to enroll in Medicare as soon as they start receiving SSDI payments. For almost everyone else, there is a two-year waiting period. In 2008, when the ALS had a chance to shape healthcare reform in a way the benefited all sick people –  including people with ALS — the organization sat on its hands. If you have ALS, you have the public option the rest of us don’t have, thanks to the ALSA’s lobbying.

So it makes sense that the ALSA is focused on research: the government is taking care of their patients. Figure 30,000 patients averaging $100,000 in care a year — the government could be spending as much as $3 billion a year taking care of ALS patients. Granted, not all of those will be on Medicare, so maybe it’s more like $1 billion, or half a billion — point being, $41 million is not a lot of money in the grand scheme of things. It is a lot of money for the ALSA, though — which will probably redouble its fundraising efforts next year. Dollars to donuts says the ALSA declares August as Ice Bucket Month from here on out.

But even if the ALSA helps find a cure for the disease this afternoon, Anthony is already screwed. His case has progressed to the point where he is disabled, and this is probably irreversible. It really sucks to be disabled in this country. What is the ALSA going to do about that? Probably nothing. But there are organizations right now working to protect and expand the rights of sick and disabled people.

In Anthony’s case, those organizations are helping him live a better life right now, rather than stringing him along with the promise of a cure. But Anthony — like many of us — is so conditioned by the disease charity industry towards thinking in terms of ‘cure’, that he can’t see anything else.

Giving money to organizations like the ALSA reinforces the ‘for the cure’ conditioning that does so much harm to our understanding of illness as a problem in society. Anthony won’t get his life back with a cure. Most sick people won’t get their lives back with a cure.

Sick or not, we all have to die at some point. ALS might be a particularly bad way to die, but it’s just one of many bad ways. What matters isn’t what kills us, but how we live our lives in the meantime.  We should support the organizations that help sick and disabled people live better, meaningful lives. I don’t think the ALSA is one of those organizations. I don’t think it does much for us, or for Anthony.

So I think it is perfectly reasonable, even preferable, to refuse the ice bucket challenge.

 

 

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Why I Am Not A Spoonie

4 August »

Many of my friends identify as ‘spoonies’ — after Christine Miserandino’s essay, “The Spoon Theory“. I don’t, and for a long time kept that to myself out of respect for the sense of identity and solidarity her essay has fostered. But I think the patient community is robust enough now that we can talk about what that essay does, and what it means, and whether it helps the general narrative around illness.

If you haven’t read the essay, it begins with Miserandino and a friend hanging out in a restaurant.

Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

Miserandino is momentarily at a loss — but she looks around, grabs all the spoons she can find, and presents them to her friend. The spoons represent the energy it takes to get through a day, point being that people with chronic illness find themselves very limited in that department.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.

The spoon analogy is clever; I definitely have days where I count my spoons very carefully. For a five-minute conversation about illness, it’s a very good way to explain some of the challenges sick people face.

The problem is, I just don’t think it’s enough. Not even close.

Spoon theory is a nice conversation to have, but not enough of a conversation. It is too pithy — it only glances against a real understanding of illness. It is too facile, and seems as likely to prevent a meaningful conversation about illness as it is to start one. As sick people, I think we owe it to each other to have honest conversations about our experience, and not tell each other fables.

I definitely see that Miserandino is getting at something universal — or close to — about illness. I think the fact that people with many different diagnoses can identify as ‘spoonies’ is a real benefit from spoon theory. But our conversations as a community have to transcend in-jokes and euphemism. Whether a person has lupus, RA, MS, cancer, IBD, or any other disease, we should be able to see the shared humanity of their experience immediately, without them having to identify as ‘spoonies’.

To the extent that ‘spoonieism’ becomes a clique for sick people, it excludes sick people who do not think of their illness in spoonie terms  — much the same way pinkism excludes patients with non-breast cancers, or Livestrongism excludes those with non-cancer diseases.

And I worry a well person who hears spoon theory for the first time might believe they understand — and sure, they do, a little, but not enough. Spoon theory could easily foster a false awareness about illness, in much the way most people think they know what it’s like to have cancer because they saw it on TV.

Spoon theory hides this truth: a well person will never really understand what it is like to be chronically ill. The only time I could see myself using it — telling a well person about spoon theory — would be to stifle their curiosity about my illness, in situations where I might be uncomfortable saying anything more meaningful.

How we talk and think about our lives affects how we live those lives. When we tell a story that says illness is easy to understand, we could be lying to ourselves about the fact that it takes hard work: compassion, patience, honesty. For “The Spoon Theory”, Miserandino wrote a 2,110 word essay: if that really does capture your experience with illness enough, you should count your blessings. I wrote a 180,000 word essay about my illness, and barely scratched the surface of my experience.

One thing I have learned is that most people do not want to know what it is like to be ill: it is too scary, too complicated, too painful for them. I worry Spoon Theory makes it too easy by glossing over the hard parts, and by using that as our story we are giving up on the compassion, patience, and honesty we deserve.

You might better appreciate my concerns by imagining something like the spoon theory for sexual assault victims: “You only have one fork. You got raped, so I took it away.” Or for racism: “The white people have all the sugar packets and you only get a sugar packet if you behave the way they want you to.” We know better than to try to reduce the experience of rape or racism to a handy metaphor. Why is it okay to do so for illness, an experience just as vast and deep and complex?

In a similar vein, ‘spoonie’ is not a label I want to wear. It sounds too much like a slur — cf. ‘darkie’ or ‘coolie’. I know that being sick sets me apart from healthy people, but here’s the thing: that’s a lie that healthy people tell each other. I’m not deviant somehow from the rest of humanity: being sick is the human condition. Sooner or later, nearly everyone suffers the pain and frustration of a body in decay. The idea that we’re different somehow is their fantasy: I’m not inclined to label myself accordingly.

It is because the experience of illness is so thoroughly human that I think we should tell stories about our illness. For the same reason, I expect those stories to be similar — but I don’t think those stories should be the same. If spoon theory empowers people to talk about their experience, that is wonderful and a huge benefit to the patient community. If spoon theory encourages people to talk about Miserandino’s experience instead, then I see that as a problem.

I don’t begrudge anybody the label ‘spoonie’. If it works for you, great. But keep telling your story, with all the honesty you can spare. It is through stories — not labels — that we can help people really understand what it means to be sick.

 

 

 

 

 

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How Am I Not A Masterpiece?

4 August »

This looks to be a series

monalisa

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I am the Masterpiece

22 July »

I had a frustrating conversation with my physician today, specifically his reluctance to prescribe a medicine (LDN) that I think might be really helpful for me. I think my frustration boils down to a lack of ambition on his part: he doesn’t want to try anything that he perceives as unusual or not normal, which I understand. The problem is that I am unusual and not normal, by any reasonable medical criteria, so he is basically telling me doesn’t want to deal with me. Anyway, this…davinci

I really hate that whole ‘medicine is more art that science’ trope. It lets doctors hide their ignorance behind the idea that medicine is somehow too fuzzy for mere mortals to appreciate. If medicine is art, I am its masterpiece — and that’s pretty f—ing sad.

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Why I Am Not A Supermodel (NSFW)

4 July »

I have a confession to make: I’m kinda hot.

I ugged up my profile pic over there just so people I work with wouldn’t recognize me, but I’m a lot better looking in real life. On a scale of 1 to 10, I would say I’m a ‘modest 8′ — which means I tell people I’m a 7 just so I don’t seem arrogant, but they know what’s up just looking at me.

That said, I will never be a supermodel. Number one, I can’t build up enough muscle to give me the body for it.

Number two, I shit in a bag.

So when one of my Facebook friends shared pictures of Bethany Townsend, I was grateful. This is her rocking a bikini:

slide_356430_3923211_compressed

It is awesome for someone like me to see someone like me being honest about her body. I appreciate her courage, and applaud her advocacy for people with ostomies and bowel disease.

But by the time the ninth or tenth person shared it, I felt the need for a reality check.

None of this is intended to undermine what Ms. Townsend has accomplished with her honesty. None of this should be interpreted as criticism of her. Rather, it’s to help people who are seeing an ostomy for the first time understand what they’re seeing and respond appropriately.

First, most people are calling what she’s wearing — not the bikini — ‘colostomy bags’. That is probably not correct, even though that’s what she calls them on the original Facebook post. But the bag on her right is probably draining her ileum, which makes it an ileostomy bag. Most times, the actual equipment can be used on either an ileostomy or a colostomy, but just because you can wear socks on your hands doesn’t make them mittens. Also, manufacturers usually refer to their products as ‘ostomy pouches’ — not ‘bags’.

The smaller pouch on her left is probably draining a fistula; the technical term for a bag that size is a stoma cap. They’re designed to collect mucus and let gas escape (through a charcoal filter!), but not to collect any significant amount of poop.

Of course, we could avoid this quibbling by calling them ‘appliances’. This has the advantage of being descriptive enough without being pejorative. After all, we don’t call wheelchairs ‘useless-legs carts’; we don’t call eyepatches ‘enucleation flaps’. It makes me uncomfortable when people refer to my appliance as a colostomy bag — which is technically correct, because it drains what’s left of my colon. I strongly prefer ‘appliance’, or ‘ostomy appliance’. It’s unfortunate that Ms. Townsend has been taught to call her equipment ‘colostomy bags’, but the publicity she’s gotten doesn’t make the phrase any less stigmatizing.

Second, this isn’t the first time a model has exposed an appliance. Way back in 2008, the Colon Club — yet another cancer club — decided to show models with appliances in their annual ‘Colondar’ calendar. Here is Mr. May, Henry Yu, and Ms. December, Heather Maes; it was a little controversial in the appliance-wearing community at the time, if memory serves, but most people found it inspiring.

08may

08decThird, just because someone got pictures taken with their appliance does not free all appliance wearers to wander around with their appliances in the breeze, no more than Eric Weihenmayer getting guide-dogged up Everest makes all blind people mountain climbers. Also, appliances are ugly — they look like medical gear, not like anything a person would wear if they had a choice.  If somebody made appliances from silver mylar, or carbon fiber, or printed Banksy art on them, I would be much more likely to wear that in public.

And none of them are really opaque. So while you may celebrate the courage on display in these photos, but in real life I think you’d find the appliances a little unpleasant, if not offensive. Reason being, in all these photos the actual bags are empty. It’s not the plastic that’s stigmatizing: it’s the shit. And the reason we need the plastic is because we can’t control the shit.

Now for the NSFW part: this is what my appliance looks like loaded.

appliance

Would Ms. Townsend’s photos would be so popular if they showed her appliance full? I doubt it. It is the fact that people with ostomies have little control over their bowels that keeps us stigmatized — not the medical equipment we have to wear. Until it becomes okay to poop in public, that is never going to change.

Fourth: even if we could somehow overcome our disgust of people shitting in public, thereby allowing people like me to expose our appliances — that isn’t liberation. It’s accommodation. It’s a stopgap measure, until we can do better. Ostomy, as a surgical procedure, is a stopgap measure for people who would die otherwise. I’m convinced that 100 years from now it will seem crude and barbaric, but in the meantime, it’s what we have.

Liberation for people like me means giving us back control of our bowels. Whether it’s a device or a procedure or a medicine, it has to be something that gives us the confidence to not need any appliance at all. For many people, that’s a Koch or BCIR or a J-pouch. As someone with active Crohn’s, Ms. Townsend is not a candidate for those procedures. Neither am I.

Until something better comes along, neither of us is going to be a supermodel.

 

 

 

 

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Never Surrender

28 June »

A couple of posts came across my FB feed this week:

Ilana Jacqueline on Huffington Post: 5 Ways You’re Not ‘Living’ With Chronic Illness

 Chronic illness is not cancer. You don’t “fight” it. You don’t “beat” it. You don’t make a voodoo doll out of it and start stabbing it with acupuncture needles. In the same way we don’t use the word “cure” to mean “treat” we can’t use the word “fight” to mean “deal with.

Selena at Oh My Aches and Pains: Graphic: You can live with chronic illness and be…

You can live with chronic illness and be happy
or you can live with chronic illness and be angry.
Either way, you’re still going to be living with chronic illness.

I probably wouldn’t have blogged about these, except that they both showed up the same week. They are not bad advice, especially if you are struggling to come to terms with your illness, but there is something here that bugs me.

Both of posts take chronic illness as given: as something that just happens to a person. Both posts argue, more or less, not to worry too much about your illness, but try to find life instead.

The problem is that both posts conflate illness with disease. There is a big difference. My disease is what it is; there’s not much I can do about it. I have to manage my disease, and live my life around it.

My experience of illness, however, is something I can change, something I can fight.

And a lot of my experience of illness has to do with how others, and society more generally, understand my disease. I didn’t get fired from a summer job because of my disease; I got fired because of my illness. I didn’t struggle in school because of my disease; I struggled because of my illness. I haven’t spent my life scrambling for health insurance because of my disease — but because of my illness.

And to the extent that illness is an experience created by society — by people who often have a lot of prejudice and suspicion of people with diseases — is that something I should just live with? Why wouldn’t I be angry? What good does it do me to pretend I’m happy?

For an uncomfortably extreme analogy: can you imagine trying to tell a black American circa 1830, ‘You can live with slavery and be happy, or you can live with slavery and be angry. Either way, you’re still going to be living with slavery?’ Yes, there were probably slaves who somehow managed to transcend their awful circumstances and be happy. But instead of trying to convince slaves to choose to be happy, doesn’t it make more sense to just end slavery?

Chronic illness is not the same as slavery. But there is a lot about the experience of illness that is informed by decisions healthy people make for and about us — which tend to be pretty bad, all around. And to the extent that our diagnoses give healthy people license to make those decisions — to discriminate against us, to profit from us, to ostracize us — we are not exactly, entirely free.

I used to struggle with my disease. I used to hate myself, hate my life, be angry about my diagnosis. It took a long time, but I came to terms with it. I am okay with my disease. It sucks, but it is what it is. And yes, every sick person needs to go through this process, to learn to accept and manage what they cannot change about their lives.

But I discovered that coming to terms with my diagnosis didn’t make me okay with my illness. I discovered that a lot of what I thought was my disease was really the product of other people’s bad ideas about illness. Whatever progress I have made, there are still a lot of people who haven’t come to terms with me.

So yeah: I’m fighting chronic illness. I’m still pretty angry. I’m never going to surrender.

 

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