The hierarchy of illness

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

My friend Stephanie summed up life with ongoing illness so well:

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

The hierarchy of illness

Sick is not sick is not sick. We all know that a paper cut isn't the same as a broken leg. 

What's worse, leukemia or a sprained ankle? Leukemia. Why? Life threatening, slow to treat, side effects of the illness are horrible, side effects of the treatment are horrible.

What's worse, multiple sclerosis or a sinus infection? MS. Why? Neurological, no cure, degenerative/progressive, incurable (I realize that's starting to be debated, but let's leave that for now).

What's worse, cystic fibrosis or Type I diabetes? CF. Why? They both have childhood onset, progressive/incurable, but let's face it, the idea of not being able to breathe is terrifying.

Ok, some illnesses and diseases are clearly pretty easy to rank and compare. The central ranking qualities that come to mind:

  • Life threatening or incurable
  • Severity of symptoms
  • Type of treatment and severity of side effects
  • Affects children
  • Neurological or affects basic body functions such as breathing, swallowing, heart function
  • Speed of illness' progress?

Now, let's try some more difficult comparisons (and if they seem easy to you, you probably need to do some research about what severe versions of the conditions can be like):

Depression or fibromyalgia

A heart attack or severe endometriosis

POTS or PTSD

Prostate cancer or Crohn's disease

Here it all starts to get a little more into the grey areas - what's worse, something chronic and very unpleasant or disruptive yet not life threatening, or something life threatening but with a good survival rate and effective treatment that has few side effects? Is it worse to have an unpredictable chronic condition that knocks you off your feet in a physical sense, or one that does it in an emotional sense (which of course also ends up being physical)?

In society, and the healthcare system, it's black and white

It may seem fuzzy when you start comparing illnesses that are a little less scary, or a little less immediately life threatening, to each other. Chronic illnesses to treatable cancers. Mental illness to physical illness. But out in the world, in society, it's very black and white. The government, the healthcare system, and society in general have a clear ranking of illness, and it goes something like this (forgive me if I have omitted any specific illnesses, but I hope this gives the general idea), starting with the most severe and most taken-seriously, to the least:

  1. Things that are incurable, severe, and degenerative (some genetic diseases, ALS)
  2. Brain problems (stroke, tumours, really any brain things)
  3. Heart and vascular issues (heart attacks, clots, vein dissections)
  4. Acute injuries
  5. Cancer
  6. Neurological conditions (MS, Parkinson's, early-onset Alzheimer's)
    At this point it gets harder to decide the specific order...but we're still in the territory of things that are taken really seriously.
  7. Any kind of severe infection that causes acute illness, or severe immune system insufficiency conditions (MRSA, AIDS, Hepatitis, Chlamydia, Meningitis, etc.)
  8. Liver and kidney problems
  9. Various developmental or physical disabilities (some of these may fall under #1)
  10. Severe mental illness (especially if a threat to self or others, or needing hospitalization)
  11. Unusual blood disorders
  12. Autoimmune diseases (Lupus, Inflammatory Bowel Disease, Rheumatoid Arthritis, etc.)
  13. Type I Diabetes
  14. Severe asthma and allergies
  15. Broken bones, dislocations, moderate injuries
  16. Other kinds of non-autoimmune arthritis or joint problems
  17. Acute but less serious sicknesses (like various colds, flus, ear aches, etc.)
  18. Cuts, bad injuries and things that need stitches, etc.
  19. Moderately severe mental illness
    Starts getting even fuzzier now, but I'll forge ahead... I'm now transitioning into the diseases that society/government/healthcare do not deal with very well.
  20. Some female reproductive issues (Endometriosis, infertility)
  21. Weight issues (low or high, both often dealt with in a shockingly equally problematic fashion)
  22. Some types of disabilities that are less well understood
  23. Very severe varieties of various non-autoimmune chronic illnesses (Irritable Bowel Syndrome, Fibromyalgia, Chronic Fatigue Syndrome)
  24. More intermittent or less severe mental illness (ie. "high functioning")
    Now we're getting into the bottom of the barrel as far as society/healthcare is concerned...
  25. Other female reproductive issues (hormonal issues, pain issues)
  26. Moderate or intermittent varieties of non-autoimmune chronic illnesses (IBS, Fibro, CFS, etc.)
  27. Chronic but less severe infections (eg. Candida), and also some more severe chronic infections (eg. Lyme - though it's becoming taken more seriously)
  28. Things like skin issues, hair issues, less well understood hormonal issues
  29. More mild varieties of various chronic illnesses
  30. More intermittent and milder mental illness
    Okay, I'm losing steam now, but you hopefully get the gist.

Real life is one big grey area

That list might seem pretty sensible. But real life isn't as simple as a list. Each person's own severity of illness, resources for support and coping, ability to tolerate (and afford!) medications, etc. is different. I'm going to use an example now, and it is just that, an example - please know it does not mean that I think I understand your specific experience or am in any place to judge it, I'm just trying to illustrate a point about discriminatory healthcare services. (And I'm certainly not trying to downplay cancer, think of it like I'm just trying to up-play other severe but under-supported illnesses.)

So, on this list, cancer is way up there. People are SCARED of cancer. I am scared of cancer. We all are right? Who's scared of chronic fatigue syndrome? Probably nobody, unless maybe if they have it themselves.

Cancer is a respected illness. By society, by the institutions we depend on (healthcare, government). Chronic Fatigue Syndrome, frankly, is not. 

Some types of cancer are horribly life threatening and acute. But others are actually not very serious - many of us actually walk around with more benign types of cancer inside us every day, and never even find out about it. Some people live with certain types of cancers for DECADES, and it makes little impact on their day-to-day lives - some types are practically their own subset of chronic illness at this point. But the word, cancer, it changes everything.

Some people who have these more benign types of cancer actually live very normal lives, but the word gives legitimacy to their illness. It gives them access to adequate healthcare. Cancer is a whole industry - there are support services, fundraisers... people rally around people with cancer.

Chronic fatigue syndrome? The opposite. There is no industry around CFS. Partly because there aren't medications for it, there's no money in it. There is no respect or legitimacy attributed to CFS. Care and support for people with CFS is ridiculously inadequate. It has a severe effect on peoples' lives - they become incapable of working, incapable of taking care of themselves, incapable of socializing. People do not rally around people with CFS, if anything people disappear on people with CFS. It's an isolating condition, where not only you are often deserted by society, the healthcare system, government services, but sometimes also your friends, your family.

People judge chronic fatigue. People do not dare judge cancer. 

Nobody would accuse someone with cancer of faking it, of having motivation problems or mental illness, rather than a physical condition. Friends and family don't desert someone with cancer, saying they're tired of dealing with the sick person, who just needs to suck it up and get back to life.

People even say that people with chronic fatigue are just seeking attention. Would you ever say that to someone with cancer? It's ridiculous. Nobody would pretend to have CFS to try and get attention! Conditions like CFS only repel people.

So, where is the support?

Through my own experiences, and sharing them, I have talked to so many people - particularly women in their 20s and 30s (that is a whole other post, why are so many young women so sick???) who are, or have been for periods of several years, debilitated by chronic and/or mental illness. Mostly conditions from #20 onwards. The one uniting theme through all of these stories is the complete and pervasive lack of support.

Some, like me, are lucky enough to have a supportive and loyal partner, who make huge sacrifices of their own (often with no support to them as the caregiver) to help their loved one survive and try to get better. Some sick people have family who fill this role. Some aren't so lucky, and frankly, it is terrifying and heartbreaking to hear about how hard it is for those who deal with this alone. They have:

Zero adequate support from the healthcare system.

Zero adequate health service coverage, even with extended/private health insurance.

Zero social support from friends, sometimes also from family.

Zero financial support - especially when they haven't been able to get a specific diagnosis that qualifies them for what passes as social assistance for disability/illness.

Zero organizations or support services for their particular illness.

These people have the potential with support to recover at least part of their quality of life, and maybe even become "productive" members of society again, but without support they are stuck in this purgatory of illness and social isolation.

It's unfair, and cruel.

Is this an exaggeration?

For ages, I theorized about this, but thought that maybe I was exaggerating all of it in my mind...until someone I know who used to have severe chronic fatigue syndrome actually got breast cancer. I eventually worked up the nerve to tell her what I'd been thinking, and she confirmed it all and then some.

With CFS, she had completely inadequate support from society/government/healthcare (luckily she has a very loving partner, friends, and family). But when she got cancer, she was able to access a ton of services either provided by the healthcare system or by volunteers/non-profits. All for free. Counselling, yoga, meditation group, physiotherapy, dietician/nutritionist, aquafit. She also qualified for some kind of health emergency insurance which was a huge relief since she wasn't able to work through treatment and recovery.

Don't get me wrong, I wouldn't wish cancer on ANYONE, I wouldn't want to trade my slough of chronic illnesses for it. I realize how non-socially acceptable this all is to say. But remember, some types of cancer are actually less severe and less disruptive of life than some types of chronic illness. Some types of cancer, people actually make full recoveries from. Of course, some don't. But chronic illness is chronic for a reason - people tend not to recover from it, and I can't help but believe that's partly from the utter lack of a support they have.

These chronically ill people also can't work. Also can't go out and socialize. Are also too sick to take care of their basic needs. They are sick EVERY DAY. Can't make plans for their futures. Can't live their dreams. Can't do anything more than survive, because of illness. It is not that they don't want to, they can't. (For some reason people who haven't been through this themselves have trouble accepting this.)

It's not that people with cancer (or any other severe illness) shouldn't have these supports and services. They absolutely should. Actually, everyone who is too sick to work, is so sick they've lost their social universes, is too sick to keep their own home clean, or grocery shop or cook for themselves should have support. Just because it's logistically difficult to manage a larger variety of illnesses, is no excuse to discriminate. That's what it is, discrimination.

Everyone who is so sick that they cannot function on a daily basis or live a normal life should have access to these supports and services. 

The burden of these structural inequalities is being completely born by those whose illnesses are not high enough on the hierarchy. And the hierarchy is artificial, it's a construct to make things easy for bureaucrats and inadequate healthcare systems. It's heavily based on how well each illness is understood, whether a doctor is able to specifically diagnose it, and whether there is a clear treatment protocol. But this makes zero sense in application - people are not their diagnosis. People are individuals. And each individual who is sick deserves care and support.

Debilitating illness is debilitating illness. And everyone who is sick should have access to the care they need to survive and recover as much as they can. Regardless of what type of illness is disrupting their lives, they deserve to have a fair chance at regaining their quality of life, and their ability to make plans and have hopes again.

Comments

EXACTLY! Sometimes I fail to make some of the most important points, because I'm so close to the issue that they seem like a given. But it's an important point and so completely true!

Congratulations on a wonderful article! And there is no need to apologize for it, there's so much truth in there. It is what it is and people need to be educated on this topic. I can definitely relate to being judged and discriminated against because of the type of illness I have. I would love to see this published somewhere with a huge reach, like the Vancouver Sun. People need to see this!

Thank you Kira, that means so much! I've often wondered about trying to get these posts up somewhere more visible, maybe I will have to look into it some more... 

Each person is an individual. Each person experiences life differently.
I understand what you mean when I state that I have fibromyalgia and chronic fatigue. But I have deep vein thrombosis as well. When you see me you do not know that I have any of this (well if I am wearing shorts or skirt you will see my compression stocking I must wear so that I can walk). I have been yelled at when I parked in a handicap parking space. I was driving my 86 yr old father who has had a stroke and a heart attack and it was really the only place available. ( I do not have a handicap parking tab unless I am with either of my parents-- my mother has had knees replaced and two severe heart surgeries). A woman yelled at me for parking there because I was not handicapped. It was the only time I lifted the pant leg to show that legitimately I did have a health issue I deal with on a day to day basis.
I have these three issues and others. I do not like calling attention to them but there are days when the trigger point -- tender point muscle issues are just too much not to say anything.

I just posted this on Facebook, but wanted to post it here too, just for posterity in case I want to come back to it for some reason:

-----

I just watched The Fault in Our Stars (along with several thousands of teenagers online), and even though I read the book, the movie was really heartwrenching. It also made me get some things that somehow I didn't get reading the book. 

I particularly found myself realizing some things in follow up to my post last weekend about the hierarchy of illness. The whole thing about why cancer gets so much more attention/funding/services/support/empathy than many other illnesses... It's the oblivion. 

I could relate so much to the characters, and all the crappy inconvenience their illnesses brought into their life. The constant of loss, of not being able to do normal things without ridiculous pain, discomfort, and effort. The way that their illness affected the people around them. That part was awful, and hit home way too much right now, with how shitty and stupid life has felt many times over the last couple months (years?)

But I don't have to face the oblivion - and the oblivion scares the shit out of people (rightly so). It's the oblivion that makes people take cancer more seriously - it brings up some kind of intense and unshakeable fear of no longer existing, or having a loved one no longer exist. People can't ignore that, can't rationalize it, in the way they can other chronic illnesses.

And a lot of the time, cancer (like some of the other degenerative/incurable illnesses like ALS) is fucking slow. The slowness is brutal - you have to watch it happen, feel it happen. It's not just the oblivion, but the long, drawn out, emotionally and physically draining marathon that terminal illness can be that makes it terrible. 

Not that this all makes it okay that so many people with other illnesses don't get the help they need and deserve. But I guess I understand it just a little bit more now. (And I realize how cheesy it is that I'm realizing this because of a movie made for teenagers, but such is life.)

ps. I feel I should state the obvious that my realization is also incredibly obvious (that cancer is taken more seriously because you can die). Of course I already knew that logically. But somehow I didn't realize how deeply it applies around of the hierarchy of illness idea until just now. I guess it should have also been obvious, but being what my personal experience is - with chronic illness, I'm cutting myself some slack. Even pretty empathetic people can't get it all from the get go. 

Great post. Would be great if it got better circulation/publication etc. I can't help feeling gender has something to do with the hierarchy too. I feel like a lot more research goes into heart issues, a major cause of death for men, than into chronic illness and other things which seem to largely affect women.

Ill also copy what I put on Facebook, in case anyone not on there wants to see:

In the UK right now, support isn't there for many conditions. And, worse, there is this idea that there are lots of 'fakers' doing it to get benefits. Even people on their deathbed haven't qualified for benefits recently. And 'disability hate crime' is an issue. So sad. On the plus side, I have found a lot of people being compassionate to me and trying to help me... it's not all been negative for me. But people definitely don't understand that a chronic condition can feel worse than getting cancer and recovering fully from it.
One last thing: rheumatologists, whose remit covers my conditions, tend to think I should be overjoyed to have this and not something requiring surgery, or arthritis. But I was exactly hoping to have something that could be operated on. And I know people with arthritis whose lives are less limited than mine. So it seems like there's some real lack of understanding out there...

Hi Hazel -

My goodness, I'm sure the gender side of the issue could fill several more posts and then some. It's only recently I've been realizing how much more chronic illness seems to affect women.

I don't think anyone would fake this kind of illness - it's isolating, and does NOT get you attention, it drives people away if anything! It certainly doesn't get you much in the way of disability (social assistance) here either, so I can't see any upside to it.

I'm certain you're not alone in having wished for something more concrete with concrete straightforward treatment options. It's a strange feeling hoping to be diagnosed with something worse, just so that you can actually hope to get some help or treatment...

Hoping this finds you AWAP (as well as possible).

Thank you! Sorry, it's taken me a while to discover your reply. Guess I didn't tick the notify box. Hope you are AWAP too!

First I want to say thank you. Thank you for writing this article and for bringing to light what many of us have been and still are trying to do. I teared up over this because I do have my husband and my children who try to understand and help BUT most of the rest of my family just don't get it and they don't want too. It was made plain to me after I finally had to give up working after 20 years over my illnesses that some of my family were not supportive at all. One, who cut me like a knife, told me I just needed to "pony up and get over it, figure out what drugs I needed to take and get my butt back to work." The pain I suffer from is often times unbearble, but to hear that come from my blood was more painful than any of my diseases. Mentally these illnesses take a toll us due to the pain but also the fact that we can't do what we want to do anymore and then the no support. I rarely speak to them anymore, because I realized that it doesn't matter and nothing will make them understand and frankly they don't want to.

Hi Donna - I think people not *wanting* to get it is the hardest part, there's no way around the hurt that comes in that rejection and judgement. I'm working on learning to really accept for myself what my reality is, and stop caring so much what others think, but it really is so hard. Humans want to feel understood and supported!

I know you posted a couple years ago, but I had to comment because I've never seen someone communicate so well my thoughts. I think you're dead on - the hierarchy is about death foremost - the tragedy and drama - and about visibility. That many of the low hierarchy illnesses happen to women and can often be dismissed as weight, lifestyle or mental health issues doesn't help.

What I want to say is how much I RESENT the fact that these other illbesess get dollars, empathy and acceptance/support because they "may" be deadly.

The person I was, died overnight after the onset of the illness that precipitated FMS for me. I've grown a slew of other illnesses in the interim years. I'm honestly not sure what's better for my family- my existence in their lives parts of the year somewhat better or less engaged and others not at all, or if I actually were gone and they could grieve and be done, move on while my partner is still young enough to find a mate that can enjoy a robust life and be a consistent, positive presence in my children's lives.

This is really dark, but I got a new illness during BCA month and I've just been so angry. When I told a friend finally how much I'm struggling, I've suddenly gotten texts from her about people I don't know who died from cancer or were recently diagnosed. I can't help but feel like it's almost a rebuke.

Not having walked in the shoes of someone who has no choice in the terminal nature of their condition, I don't know if this hypothesis is true - but my suspicion, especially as their quality of life gets to the level many of us live with every day, is that perhaps they accept and welcome the end - as difficult as it is - it's a huge loss, but living this way and as I imagine it is with end stage cancer- not good. So people cry and heave at the tragedy of the family left behind - and it is a loss. But given the choice of having my young child watch me whither and succumb to the bed for months out of the year, never knowing which mom to expect and definitely not getting the one she needs and deserves, sometimes I feel like we all need to get over our collective fear of death as the worst that can happen. I'm not convinced it is, and I think that's what I resent the most about the Illness hierarchy. With cancer, you get better or you don't. Unfortunately for some, there are awful aftereffects with survival. But you don't just linger, dying one day at a time over a long period of years with a negligible quality of life. I feel very angry this month as I witness the outpouring of pink and dancing and makeovers for those fighters and survivors- though I stand in solidarity with them - the blame is not in them but on a culture that can't deal with depressing realities.

Thank you for your insightful essay!

That's all! : )

This may be familiar reading, but if not, here are some research that might be of interest:

'Do diseases have a prestige hierarchy? A survey among physicians and medical students'
http://www.sciencedirect.com/science/article/pii/S0277953607003929

'Prestige rankings of chronic diseases and disabilities. A survey among professionals in the disability field'
http://www.sciencedirect.com/science/article/pii/S027795361400776X

'Stability of Tringo's hierarchy of preference toward disability groups: 30 years later.'
http://psycnet.apa.org/psycinfo/2000-00515-014

Regards,
Erik

Thanks, great references Erik, hadn't seen those! (Pardon the brief reply, I can barely type these days, stupid mystery arthritis...)

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