how do we treat the sick?

There’s been quite the flurry of noise on the Internet about the American Health Care Act that was passed in the House of Representatives today. Something that caught my attention is an interview with Mo Brooks (R, Rep. AL), in which he said:

‘People who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people — who’ve done things the right way — that are seeing their costs skyrocketing.’

Source: CNN Interview with Mo Brooks by Jake Tapper (around 3.20 of the clip)

His statements imply that people who lead healthy (‘good’) lifestyles don’t have pre-existing conditions, which also implies that people who do get sick or have pre-existing conditions somehow did something to deserve their poor health.

Brooks does immediately add, ‘Now, in fairness, many of the people who have pre-existing conditions have those conditions through no fault of their own.’

It’s the earlier statement that is getting the headlines and the attention, and for good reason. The problem here is in placing a moral value on a person’s lifestyle — whether they exercise regularly or diet or eat well — which is what the first statement does: people who lead ‘good lives’, who have done things ‘the right way.’ How, then, do you reconcile the second statement, that those with pre-existing conditions are not at fault for having them, with the first? You have already established the premise that ‘good people’ don’t have pre-existing conditions. So how can someone have a pre-existing condition and not have done something to deserve his or her condition?

This is not a new question. I am reminded of the disciples asking Jesus when they see a man blind from birth: ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ (John 9.2) We might not express it as outright as that, but we still sometimes have that sentiment that if something bad happens to someone, then they probably deserved it: this idea of, ‘Well, they had it coming.’

But we need to remember Jesus’s answer: ‘Neither this man nor his parents sinned; but this happened so that the works of God might be displayed in him.’ (John 9.3)

Granted, in the gospel, the work of God is Jesus restoring the man’s sight, which isn’t exactly something we can expect to happen today (it wasn’t common then, either). That doesn’t mean we can write off Jesus’s answer, though.

Neither this man nor his parents sinned; but this happened so that the works of God might be displayed in him.

Often I see the focus of this passage placed in the following sentence or in the events after the miraculous healing, to the point that this sentence is overlooked. If this sentence is evoked, it’s usually done after some misfortune or tragedy, along with the platitude, ‘All things happen for a reason’ (with which I politely disagree, but that is another subject).

What are the works of God and how might they be displayed? What does that look like today? Right now, in the wake of the AHCA passing the House, this is what I hear from that passage:

The works of God are displayed in how we treat the sick, the poor, and the needy.

Our words, our thoughts, and our actions: what are they when we encounter someone who is ill? What are they when we encounter someone who is chronically ill or differently abled? Not just how we treat that person as an individual; but how do we treat them as a group when we shape our ideas about health care and when we vote? Are we treating the sick, the poor, and the needy in such a way that it displays the work of God?

Continue reading

on commercial healthcare

Yesterday I went to the ER (A&E for my British readers). I had been doing some DIY work on the patio/catio and the step-ladder I was standing on inexplicably folded out from underneath me. I immediately retrieved frozen vegetable bags from the freezer to put on my bruised and blindingly painful left foot, peeled off the sock, and saw that it was bleeding. I swallowed some painkillers and hobbled my way to the bathroom to wash my foot. The cut, once I could see it, was far deeper than I knew I could manage alone. Hastily, I bound it with tissues and medical tape, maintained pressure on the wound, and phoned a friend to ask about going to the ER.

surgical shoe 14-03-17

It looks more dramatic than it really is.

I had only been to the ER twice before, and only once in the U.S., more than a decade ago and only because I needed to see a doctor on the weekend. Since then, the number of independent urgent care centers have proliferated, in part encouraged by competition. Was there some trick to know which one to go to? Were some covered by my insurance and others not? My friend assured me that I could go to any of them, so we located one closest to me and I drove myself there. I was the only patient and was seen to immediately.

The commercial quality of healthcare in America was apparent by the sign announcing, ‘Highest rated on Yelp!’ on the entry door, and was highlighted again when I was checking out: not only was I asked to fill out a customer satisfaction survey, but I was also given a gift bag, the contents of which were all branded with that urgent care center’s logo. Today the center phoned to check in on how I was doing and to ask again for a customer survey.

The entire commercialization of healthcare part of the experience leaves me baffled and repulsed. That healthcare is to be so commercialized and run for profit is antithetical to my belief that access to basic healthcare is a human right, especially in a country that claims to be so far advanced and civilized as this one, and to my general distaste for excessive accumulation of wealth, particularly at the expense of others. In terms of customer satisfaction, what does it matter beyond competent and correct care and that everyone involved behaves professionally? I don’t need a gift bag or be pampered by the staff. I don’t understand the mindset that equates patient with customer.

(The cut was deep enough to need stitches, but its placement and clean edges meant that they could use a ‘super-glue’ for skin instead. It hardly hurts at all; in fact, my bruises and the tension headache that followed hurt worse once the foot was bound up. I’m lucky that it wasn’t worse, considering that I landed on concrete with various bricks and wooden planters around me with sharp edges.)

what not to say to someone with chronic pain

Yesterday was not a good day for me. Living on the plains, even the southern tip of them, means that the weather changes frequently, often drastically, dropping (or rising) some twenty degrees Fahrenheit as the wind shifts from north to south. One of the ways rheumatoid arthritis affects my life is that it flares up whenever the weather changes, and, in North Texas, that’s every few days or so, especially as we trudge onward into spring. Additionally, I am unable to take one of my RA medications until I have fully recovered from having glandular fever/mono, which means I am more susceptible to flare-ups.

So while I laid in bed, having stacked my OTC and prescription painkillers and after taking a hot bath that afforded only some relief, I saw that a friend had shared the article ‘19 Things People with Chronic Pain Wish Others Would Stop Saying’ from The Mighty. As I read the article, I found myself agreeing with every. single. one.

I understand not knowing what to say when you’re sympathetic but can’t do anything. I’ve felt that way before, when faced with others’ situations. I usually inwardly forgive the speaker, making allowances for their being an acquaintance, stranger, or ignorant about rheumatoid arthritis. Even so, these are my three biggest bugbears:

‘Have you tried yoga/bee sting therapy/gluten-free diet/turmeric/<random cure-all here>?’

Rheumatoid arthritis is a complicated illness that is not going to be solved by adding more turmeric or Omega-3s to my diet. My treatment is between myself and specialists in rheumatology and autoimmune diseases. If there is some credence to bee sting therapy, I am sure there are scientists researching bee venom to isolate and synthesize its miracle properties. In the meantime, no, I am not going to go out and get stung by bees.

I understand the impulse to be helpful but suggestions like that are both unsolicited and under-informed. Offering advice for someone else’s health condition is also intrusive and bad-mannered because it’s none of your business. You don’t have to provide a solution to their problem; very likely you can’t.

It would be better to say, ‘I’m sorry you’re in pain. What are things you find helpful to cope with it?’ Even better, ask if there is anything you can do to help them.

‘Oh, you’re too young!’

Obviously, I’m not. I developed RA at age 20 and was diagnosed at age 21; a bit unusual, but not impossible. Being a young adult does not negate the fact that I experience arthritic pain that many do not feel until they are in their sixties or seventies. I have lived for eleven years with this pain and will live with it for the rest of my life.

Instead, acknowledge the fact that it must be difficult to live with this kind of illness from a young age: “Wow, that must be rough. I’m sorry you’re hurting.”

‘Get well soon!’

Again, I understand the sentiment: that I feel better soon. But there is no cure for rheumatoid arthritis. I will never be ‘well.’ I may be less stiff or in less pain, but I will never stop having rheumatoid arthritis and everything that is accessory to it.

Rheumatoid arthritis is also inconsistent to the outside observer. Yesterday I was bedridden for most of the day; today, I got out of bed somewhat stiffly, but showered, dressed, and went to work with a level of discomfort and pain that is invisible to the outside observer. But that’s because the weather didn’t change between yesterday and today, or resting yesterday meant that I had the energy to work today, or some unknown variable.

So replace ‘get well soon’ with what you’re really saying: ‘I hope you feel better soon’ or ‘I hope the pain decreases so that you can manage better.’

And, always, instead of soliciting help, ask: ‘How can I help you manage?’

Keep still

Other than waking up enough for presents on Christmas Eve and dinner on Christmas Day, I’ve been sleeping since Little Christmas Eve. I have been exhausted since submitting my PhD thesis. Bone-weary. This passage from The Left Hand of Darkness resonates with me right now.

A physician came and said to me, ‘Why did you resist dothe?’

‘I was not in dothe,’ I said. ‘I was in a sonic field.’

‘Your symptoms were those of a person who has resisted the relaxation phase of dothe.’ He was a domineering physician, and made me admit at last that I might have used dothe-strength to counter the paralysis while I rowed [across the bay], not clearly knowing that I did so; then this morning, during the thangen phase when one must keep still, I had got up and walked and so nearly killed myself.

— from Ursula K. Le Guin, The Left Hand of Darkness

I used ‘dothe’ — described as ‘hysterical strength’ in the novel, or the intentional harnessing of adrenaline to push through exhaustion — to get through these last few months. But pushing through on adrenaline has its cost. Now I am in the thangen phase and I must keep still.

I’m still baffled that I more-or-less slept through Christmas and that even going up the stairs or taking a shower leaves me tired. It looks like I’ve borrowed against January’s spoons,* and I need to rest a while. I may need to rethink my plans for January. I had planned a series of posts about Christmas and Ebenezer, but I am too tired to write them. Instead, you get this post about my exhaustion and The Left Hand of Darkness.

Which, if you want to read a long, but interesting, interview with Ursula K. Le Guin that includes talking about The Left Hand of Darkness, you can read this one from The Paris Review.

And, fun fact, I have read twenty-four (24) out of thirty-four (34) of Le Guin’s fiction for adults. (She’s prolific: non-fiction, children’s fiction, poetry… I haven’t touched those yet.)

* ‘Spoons?’ You ask. I refer you to The Spoon Theory.


This is just an update.

  • Yes, I am still alive. Today might be day #3 in bed, two days after a visit to the A&E (ER to Americans), but I’m feeling better and I might even eat real food today.
  • My conference went really well. My paper was received with interest and I received lots of helpful feedback.
  • However, I’ve noticed that whenever I take public transport from one end of the country to the other, I get ill. This may mean that the next train journey I have down south (to Oxford!), I will be the passenger sporting a face mask.
  • Due to illness, I wasn’t able to participate in any of the 600th anniversary events this week. I had a ticket to the graduation ceremony and they even did background checks for that! But I watched most of the ceremony on live stream, before I was taken ill…

So no, I didn’t get to meet Judith Butler, Rowan Williams, et. al. in person, but I did get to see them on my computer. Sigh. And I was able to see some of the fireworks from my house, so that’s a bonus. I’m still annoyed though because it’s not like I’m going to be around for the next centenary of my university.

Anyhow, I am getting better, and I hope to be well by Tuesday (which is in TWO DAYS), because it will be a certain someone’s birthday and he will be visiting…

Just plain tired

It doesn’t matter if I get “enough” sleep. I’m still tired during the day. Why?

  • Allergies make me tired.
  • Anxiety makes me tired.
  • Borderline anaemia makes me tired.
  • Chronic sinus infections make me tired.
  • Hypothyroidism makes me tired
  • Rheumatoid arthritis makes me tired.

Even some of the medications treating these various ailments make me tired.

I strictly don’t drink any caffeine after 5PM, and I only have 1-3 cups of tea a day anyway. I can’t drink coffee because it makes me sick to my stomach. Sodas are too sugary for me (and too chemical-y). I take a complex B vitamin daily anyway because of my mostly-vegetarian diet. I’m not a fan of naps because they tend to just make me really groggy. Taking a walk outside helps only so long that I’m outside (and away from pollinating plants).

Yes, I know: I work a lot. Being a PhD student and having a part time job is exhausting. Maybe if I worked less I’d be less tired… that’s the Holy Grail for once I submit my thesis, anyway!

I think I’ve been complaining of chronic tiredness since I was age 13. This is just another round to that age-old complaint. Now back to your regularly scheduled programming. 🙂

Counting spoons

It was such a beautiful day. F. and I sat out on Castle Sands, watching the waves and soaking in the sun.

IMG_8414Can you spot what’s unusual about this picture? Having trouble? What you don’t see is that I’m in the middle of a flare up. F. helped me up that rock and then helped me down again. The point of the picture is to show how normal I look even during a flare up. Rheumatoid Arthritis is mostly an invisible disease.

I’m one of the lucky ones. After a year and a half of aggressive treatment I went into remission. No bone damage. But that doesn’t mean the RA has gone away. Seven years on and I still ache in the mornings. Sometimes I’m just too tired to do, well, anything. This last flare up is the worst I’ve had in a while — I say is, because it isn’t fully gone yet. I went in today for a follow-up appointment on the steroids they gave me a few weeks ago: the steroids worked for two weeks, and now the problem joints are hurting again. I might be cycling again and walking without a cane, but it still hurts when people shake my hand during the passing of the peace at church.

IMG_8399This flare up has reminded me what it’s like to have RA. Not that I had forgotten the fact, but I had been in remission long enough that I didn’t have to think twice before every activity, to plan my meals around what my hands and knees could handle. (A moment to sing praises: F. brought a bar stool for my kitchen! Now I don’t have to stand on achey feet, ankles, knees, and hips if I need to cook on bad days. Though I wish I could have seen him cycling across town while carrying it…) To refer to The Spoon Theory, I had been in remission long enough that I had become lazy about keeping track of my spoons.

What causes a flare up? No one knows. No one knows what causes RA to start with, let alone why it goes into remission or comes back. Personally, I know I’m affected by changes in weather and spring this year has been unusually unpredictable. I’m also affected by stress, something I am intimately familiar with since I am in the final months of my PhD.

I may not look sick, but I am. The way I see it, I can either give up or keep fighting. This is my life and I want it full to the brim with adventure, ambition, laughter, and love. So I will keep pressing on. RA has taught me to recognise the noble in the mundane, to realise that being faithful in my life here is as important as saving the world. I will dream, I will compromise, I will accomplish — all while counting spoons.

Protein log results

The results are in and the calculations are done, and I’m surprised by the results of my food log the last three days for keeping track of how much protein I am getting in my mostly-vegetarian diet. Surprised, because I was convinced I wasn’t getting enough. I was wrong. To see the log, click ‘Continue reading…’ below.

Who knew that a 250ml glass of milk would give almost 10g of protein? Or that each slice of wholemeal bread would also have about 10g of protein? Even more surprisingly, that the scones Rebecca and I baked last night would have 4g of protein each?

Various sources agree that an adult female should get at least 46g of protein a day. I tend to get at least 50g/day. Rebecca and I also checked whether I was getting the important amino acids from protein, and I was. Pretty much, if you still eat dairy and eggs, you’ll be fine in that regard.

I’m still curious whether there might be a nutritional contributor to my tiredness, but I’m getting more convinced that the main culprits are physiological and occupational. I am a PhD student in the final year of her PhD. I have rheumatoid arthritis. These two things alone are enough to make anyone tired!

Continue reading

Follow-up log

After talking with Rebecca about my Food Log, we speculated that although my calorie count is healthy, I might not be getting enough protein. So I am going to keep another log will calculate at the end how much protein I was getting each day. I suspect I’m not getting enough, but… no adjustments will be made until the log results are in.

Why am I doing this? Because I want to be healthy. I have a lot to do and a lot more that I *want* to do and I want to have the energy and the strength to do it. I have been told by a few different sources that the next 9 months will be the most difficult in my life (to date) as I work to FINISH my PhD thesis, submit, and prepare to defend it. I have to eat, so I might as well eat well and make sure I’m getting the nutrition I need to perform my best.

Tune back in on Saturday for the results of the Protein Log.

chocolate helps

When one wakes up in the morning in pain in all of one’s joints; when after an hour even the pain killers aren’t helping; when one doesn’t have a bath in order to soak in and one is not well enough to stand in the shower, what does one do?

One eats chocolate. One drinks hot chocolate. One especially drinks hot chocolate in one’s magical ‘I solemnly swear I am up to no good / Mischief managed’ mug. One drinks hot chocolate out of this mug while watching Harry Potter and the Prisoner of Azkaban and one eats chocolate whenever one sees a dementor and whenever Professor Lupin gives Harry a piece of chocolate. ‘Eat this. It helps, it really helps.’

Rheumatoid arthritis is frustrating, painful, annoying, draining, tiring. I’ve spent most of the day in bed. I’m about to take more medication, and then I am going to eat chocolate ice cream. Remus Lupin was onto something: If I am going to be miserable, then I am at least going to eat chocolate.