It’s been hard for me to read or watch the news recently. The ongoing debates about healthcare have led to many sleepless nights. I finally decided to take a temporary break from national news a few weeks ago, when several public figures made comments suggesting that “good people” did not become ill. There’s been more than one, so I’m not going to name names. It’s not just in the political arena, either – there have also been people like the CEO of a major (and very expensive) supermarket chain, who in 2009 claimed that most diseases were totally preventable through “lifestyle choices.” It just seems to be popping up more right now. Even in comments for articles about chronic illness, there will sometimes be people who insist that if the patient hadn’t done X, or would just change their diet to Y, they wouldn’t be sick.
Yeah, no. Let’s chat, shall we?
There are probably people who will read the title of this article, or that first paragraph, bristle, and suggest that disability and chronic illness advocates should not be political. I ask that you bear with me and read on. These attitudes aren’t new, and they aren’t exclusive to any one political party. They affect all of us, regardless of our political leanings. They’re a remix of very old, ignorant, and dangerous ideas, and it’s disheartening that they’re making a comeback.
The notion that illness is either a punishment from a higher power, or an indication of someone’s character or morality, has been around for a very long time. In the common era, one can look at accounts of treatment of people with disability and illness from various centuries – the Middle Ages, the Industrial Revolution, and onward — and see a recurring pattern. In the 19th and early-mid 20th century, even though “consumption” was heavily romanticized in literature and drama, people who had tuberculosis in real life often faced heavy ostracism. In Germany in the 1930s and 40s, the Nazis systematically murdered thousands of men, women and children with disabilities via Aktion T4. Many others were forcibly sterilized. Nazi propaganda branded people with disabilities as “drains on society.”
Societal abuse toward people with disabilities and illness didn’t stop there, either. In the memoir “Karen,” written in the 1950s, Marie Killilea noted an incident in which she and her daughter Karen– who lives with cerebral palsy – were literally run out of a guesthouse by a proprietor who shouted, “Only bad, dirty people would have a child like that.” In the 1980s, people with AIDS and HIV, their families and those who worked with them were often treated with extreme prejudice, harassed and threatened. Many lost their jobs or homes, as well as their relationships with family and friends.
One can spot common threads in this long history of prejudice and harassment: that people with illness and disability were considered unworthy of compassion, or that their conditions were thought to be some sort of punishment for their own actions – or those of their parents.
With this latest rash of comments, we’re back to the same old song: judging disability and illness and the people who live with them. They’re saying that healthcare shouldn’t be provided to everyone because everyone doesn’t deserve it. Instead of exploring ways to alleviate the real issues that make healthcare unaffordable in America – the exorbitant costs for care and medications, as well as expensive insurance premiums, deductibles, co-pays and coinsurance – they’re diverting attention and emotion to groups that society loves to judge: the poor, the sick, the unemployed, and the overweight. It’s a lot easier to suggest that someone’s ill because they’re a bad person, or they somehow brought it on themselves, than to puzzle out real solutions. It’s a way to strip patients of their dignity and deter others from being compassionate toward them.
It’s rubbish all the way around, but I’m very curious to know, exactly, how they think this works with genetic illnesses and congenital conditions. I have both. I mean, what, was I a naughty embryo or something? Said genetic condition begets complications, including a elevated incidence of cancer, autoimmune disease, and respiratory and endocrine conditions. Those complications can lead to additional ones. In other words, the blueprint was already in place, irrespective of anything I did.
I can hear the shouting now: Oh, but that’s different. We’re not talking about genetic illnesses. I was born with genetic and congenital conditions. They were not found until I was an adult and the complications had gotten their teeth into me. Do you think people even considered that possibility before I had a clear diagnosis in hand? Nope.
We talk a lot about prevention, but when it comes to chronic, serious or long-term illness, if this is even possible, it is about lowering risk – not eliminating it. I’ve personally got several strong risk factors for a specific type of cancer. I’ve done everything humanly possible to be proactive about that, but I’ve still ended up with abnormalities. There’s unfortunately always the chance that one day, the biopsy results won’t be benign. And that won’t be my fault.
If you look closely, you will notice that even prevention websites couch their information in very indefinite terms… this particular action might reduce your risk of one illness or another, or you can help lower your risk of disease, or these things might make a difference. All of that is very careful language to indicate that it’s not a guarantee, because so many other aspects are thrown into the mix. On the Arthritis Foundation’s website, for instance, on a page entitled, “How to Prevent Arthritis,” the very first sentence is: “The fact is, there is no sure way to prevent arthritis.”
The other part of “prevention” involves detecting certain illnesses before they’re far along, or heading complications off at the pass. You’re not necessarily preventing the illness; you’re keeping it from reaching endgame. For that, we need… drumroll…affordable healthcare that will cover all necessary screenings, and knowledgeable healthcare providers who know to order those tests. We also need doctors to more aware of the complications various conditions can cause. Lack of solid provider knowledge can easily harm patients. If I’d been diagnosed with primary immunodeficiency 10 or 15 years earlier, it might not have done as much damage to me. Or, at least, we’d have known where the damage was coming from so we could address it properly and increase my overall quality of life.
One more example: I happen to have two illnesses that increase my risk of diabetes: primary immune deficiency and polycystic ovary syndrome (PCOS). If you think that my doctors have been on top of this, let me clue you in. My first endocrinologist didn’t even mention it; my second said that PCOS was a “benign” syndrome and didn’t test me for insulin resistance – which can put a patient on the road to diabetes and cause weight issues – until I insisted.
I have to laugh when people insist that exercise is a failsafe for illness, too. If that were the case, I’d never have become ill. I’ve been very active my entire life. As a kid, one of my most prized possessions was my bicycle. I loved to dance, swim and spend hours running around in the park. As an adult I walked four miles round-trip to work every day for years, continued dancing, race walked in 5Ks and did flying trapeze. Because I like working toward specific goals, I even completed the Presidential Active Lifestyle and reached the Gold level in the Presidential Champions fitness programs. Around my apartment you’ll find free weights, a pedaler, resistance bands, fitness DVDs and numerous other pieces of exercise equipment, all of which were used on a regular basis.
Spoiler alert: it didn’t keep me well.
I still eventually became ill enough to stop working. For a while I was actually in the habit of bringing my collection of 5K race bibs and keeping my Noom app at the ready at doctors’ appointments so I’d have a tangible defense when they started in with the “…you need to exercise” lectures.
Do we know how every single instance of chronic or long-term illness happened to every single person, ever, or what, precisely, flipped the switch for whatever genes they have? If you do, dear Armchair Physicians, please line up to accept your Nobel Prizes, since even scientists who have dedicated their lives to studying specific chronic illnesses still haven’t cracked those codes. It’s not a simple equation where you input risk factors, genes and environment and yield the same response every time. Whether we’re talking about asthma, Ehlers-Danlos syndrome, multiple sclerosis, lupus, Crohn’s disease or any other chronic or long-term conditions – and there are thousands and thousands — there’s a nebulous mix of genetics, environment, sometimes previous illnesses (such as exposure to Epstein-Barr or other viruses) and whatnot. Some treatments work for some patients, but not for all. Some conditions, such as my primary immune deficiency, hit some people worse than others, and science still isn’t sure why.
None of that matters to some people, who are still shouting about “personal responsibility.” I’ve always thought that getting medical care and managing one’s illness or condition is a huge act of personal responsibility, but let’s put that aside for the moment. These public figures think that “good people” who “do the right things” and are ”responsible” don’t get sick or injured, apparently. How far, precisely, do they want to take this?
Should we refuse to cover sports injuries – after all, the person could have chosen not to play? Should we refuse to cover injuries from accidents if the person was at fault in any way? How about travel-induced deep vein thrombosis? Injuries or illnesses sustained on the job? Injuries or illnesses sustained in certain jobs, the ones we don’t like? It’s a ridiculous idea, isn’t it? If someone’s sick, they need help, not alienation.
We all make choices about how we interact with others, including people with chronic illnesses or conditions. Do we really want to remain entrenched in attitudes that are literally medieval? We can condemn people and leave them to die or suffer, or we can condemn the high costs of care and insurance. In my opinion, “good people” would only make the latter decision.