Content note: this post discusses the topics of suicide and death.
I had a pretty good treatment day recently.
I didn’t even get upset that a new nurse tried and failed to get my infusion started. What’s another blown vein, anyway?
The infusion team was excited because they thought they’d seen a picture of me on a Facebook ad (it wasn’t me) – they’d even saved a screenshot to show me. My conversations with the nurses were light-hearted before I transitioned into catching up on emails.
I hid myself in my favorite corner where I can sometimes pretend I’m the only one in the room and I nearly forgot I was in a building with the word “cancer” all over the front of it.
I love the infusion team. And I better love them – these are treatments that I’ll need for the rest of my life unless this drug stops working or a better treatment shows up. I’m what you call incurable.
But as I was leaving my appointment I almost walked into a vendor table being set up for an event. On the table was a sign reserving it for a lingerie business. And then my eyes caught something else: pink.
Pink was everywhere. Rose petal fabric. Pink shirts. Pink everything. Pink was in the air. It smelled pink.
October. Breast Cancer Awareness Month.
I can’t explain how crushing it was to leave my better-than-usual treatment, then turn the corner into an explosion of pink for an event that screamed, “You’re in someone else’s space.”
I have Ankylosing Spondylitis. The infusions I receive for my disease happen in a medical complex named Mercy Cancer Center. Every time I enter the building I see the name in big bold letters above the door and behind the check-in desk. While I wait for my appointment I see poster-sized lists of support groups and special events specifically for people with cancer.
If this building’s name signifies the importance of the diseases treated there, then the only disease that matters there is cancer. Cancer is the norm.
There is no Spondylitis Center or Arthritis Center for my infusions. I don’t even have the option of going to a non-branded, generic infusion center. This is my only “option.”
When I saw the lingerie business sign I couldn’t breathe.
I thought of my advocate friends who’ve had or have breast cancer, and how the extreme marketing around breast cancer actually hurts patients more than it helps.
I think a lot of people know that by now, yet the hyper-branded pink ribbon continues to puff its pinkness for the sake of … being the loudest for cancer. Three cheers for Pepto Pismol ribbons exploding out of tee-shirt cannons (and where does that money actually go?).
After I nearly ran into the lingerie table I knew I was no longer in my safe, happy infusion corner. I was now in territory where I truly didn’t belong – once again occupying space as an outsider. Where my disease didn’t matter.
And I felt naked. Vulnerable. Like how I felt when I was only permitted to play high school soccer on ‘the boys’ team’ because Title IX forced the school to let me play since there wasn’t a girls’ team. I was harassed for not being a boy. But it was my only option.
I thought of other people who come to this complex for treatments and appointments for diseases like myalgic encephalomyelitis, lyme disease, heart disease, psoriatic arthritis, and more.
I imagine many people with those diseases feel the same as I do when I show up for my Ankylosing Spondylitis infusions and immediately feel like I’m not supposed to be there, as if I’m encroaching on private property.
In these spaces I have two “choices.”
I can choose to out myself and say, “I have Ankylosing Spondylitis,” in a space where everyone assumes I have cancer, or be ok with everyone assuming I have cancer instead of claiming my own disease. Generally I shut my mouth, pretend I’m invisible, and find a corner of the infusion room where I can pretend I’m cool with being an outsider.
I am silenced by that space.
Me; the advocate. Silenced.
In a world where cancer remains hailed as the Queen Of All Diseases, outing myself for having a different sucky disease is risky.
People have gotten really angry when I’ve claimed my own or others’ suffering. I’ve been told by strangers and friends alike: “For crying out loud, people have cancer, quit your whining” and “At least you don’t have cancer,” and even “How dare you compare other diseases to cancer!”
The underlying tone of these responses infers that any disease that isn’t cancer is trivial and therefore doesn’t need a platform.
I myself used to operate with this lens.
In college I shaved my head to support people with cancer. I had a list of dozens (yes, dozens) of friends I’d lost to the disease and I added one or two to that list each year. When people asked me what I was most afraid of, I would say, “Nothing but cancer.” And I firmly believed that it was the worst thing that could ever happen to anyone. After all, I’d seen the damage it could do firsthand.
I hopped on the cancer bandwagon because it was easy and looked good.
Cancer, socially recognized as the most horrible disease, under which every other disease is defined in degrees less-than, is easy to collectively hate. The social structure around it is so powerful that people automatically think “cancer” as soon as they hear, “My friend was just diagnosed with _____.” Other diseases must fit in where they can and hope for some fraction of recognition underneath the behemoth of Cancer(™) awareness.
So, in college, I wore shirts with cancer ribbons and my shaved head with pride so everyone could see that I hated cancer with a vengeance, just like everyone else. It felt GOOD to be raising awareness about a disease that everyone already knew was bad. I knew that if I ever got diagnosed with the Big C everyone would have my back.
And then I was diagnosed with ankylosing spondylitis and the world didn’t have my back.
Nobody knew what I had, so nobody knew to care.
When I had to explain my own disease even to doctors, and when I saw no public recognition of the disease, I felt alone and isolated in both social and medical circles. I’d done so much work for cancer, a disease that didn’t really need me, and then I was diagnosed with a disease that needed 100 times more advocacy than it had.
My diagnosis woke me up to the fact that not all common, debilitating diseases receive proportionally commensurate attention, money, awareness, clinical importance, and time. And when one disease overshadows another, the people with the hidden disease suffer more and have to fight harder for visibility in every environment.
I realized how isolating my own cancer activism had been to other diseases as soon as I was living with an ‘other’ disease. I didn’t have a sexy disease that was fun to hate (the disease isn’t sexy, but the marketing around it is).
Cancer, the disease I thought I was afraid of, became the disease I wish I had. I spent sleepless nights wishing I could trade diagnoses so it would be easier to get support and treatments and care, but mostly I desperately wanted compassion and validation. But I held my tongue because I knew people wouldn’t understand. I internalized my own grief, desperately wanting to be seen for my invisible suffering.
If cancer patients got automatic compassion and validation on top of streamlined care, then I wanted it too, no matter which disease would kill or disable me faster.
The moment Nixon declared a War on Cancer by signing the National Cancer Act of 1971, the message was clear: cancer was the only disease worth fighting on a massive scale with dedicated federal dollars.
With the signing of the Act, the National Cancer Institute (NCI) became the only federally funded disease research institute, and its annual budgets and funding bypassed traditional approval by the National Institutes of Health (NIH), and were instead approved by direct submission to the President. At the time the Act was instituted, the majority of deaths in the US were from heart disease. To this day, the NCI remains the only permanently federally funded disease-specific institute, and heart disease is still the deadliest disease.
In five decades, the “war on cancer” has helped find cures for several forms of the disease, lowered the death toll, and streamlined diagnoses and many treatments. But after five decades of focusing heavily on a single disease, other diseases that are equally or more devastating remain underfunded and largely hidden from view.
Chronic diseases, including “cancer, diabetes, hypertension, stroke, heart disease, respiratory diseases, arthritis, obesity, and oral diseases” ravage nearly half of all Americans and are the “leading cause of death and disability” in the nation.
Arthritis (with all its 100+ forms) is the leading cause of disability for adults in the USA (that costs the nation a ton of money and a huge number of people their quality of life – and even their life itself). Chronic low back pain is the second leading cause of disability in adults in the USA, and the first symptom for many who later discover they have ankylosing spondylitis.
Don’t all common devastating diseases deserve wars against them? Would it feel like a competition for resources if Nixon had declared a war on multiple diseases at once, such as the top three causes of death and the top three causes of disability?
Where would we be now?
I can’t answer that question. What I can do is share what I know now from my own experience and research.
I spend more time teaching people how to say the name of my disease, Ankylosing Spondylitis, and more energy responding to the “at least it’s not cancer” line than seeing the light go on in people’s minds that we with AS also need equitable funding, awareness, treatments, recognition, and more. I spend more time fighting for recognition from my own doctors than receiving the care I need.
Spondylitis is more common than Amyotrophic Lateral Sclerosis (ALS/Lou Gherig’s Disease), Multiple Sclerosis (MS), and Rheumatoid Arthritis (RA) combined, yet no one has heard of it. We don’t have a line item for research funding on the annual budget of the National Institutes of Health. Some health insurance companies won’t even approve medication to treat our disease and prevent damage until they see proof that the disease has already caused permanent, irreversible damage.
There’s no automatic screening for AS as soon as someone complains about low-back pain to their doctor.
While *Breast Cancer (read a clarification about this below) is the leading cause of death by cancer among Hispanic Women, and the second leading cause of death by cancer for “white, black, Asian/Pacific Islander, and American Indian/Alaska Native women,” many in the chronic disease community argue that death isn’t the worst thing that can happen to a person.
This is evidenced by the number of suicides in the chronic disease population, due to multiple reasons including “poor quality of life coupled with hopelessness for relief; loss of employment, finances, and/or relationships; chronic pain; secondary depression; and comorbid mental and/or physical illnesses.”
Billions of people are living with debilitating diseases (including cancer) for the rest of their lives, and possibly millions of those people would rather die than continue to live in a body that robs them of their quality of life. Many of these diseases remain hyper-stigmatized and the people who have them live lives of internalized pain and suffering.
If you are feeling like harming or killing yourself, please talk to someone about what’s happening. Call this number day or night (USA): 1-800-273-8255 or you can click here to webchat with someone. Click HERE to access a list of hotlines and crisis centers around the world.
Several states in the USA are beginning to talk about Right to Die laws, yet they usually require people to be diagnosed as imminently terminal, rather than measure right to die qualifications based on quality of life standards.
I see stories of people with Myalgic Encephalomyelitis who haven’t been able to leave their beds for decades, who live permanently ensconced in a darkened, quiet room barely able to communicate or interact with other humans.
People in my own disease community often share in online groups that they’d rather die than keep living with a disease that causes constant pain almost as intense as childbirth and more intense than non-terminal cancer (see the McGill Pain Index below for frame of reference).
“Is this really life?” they say, “I can’t do this any longer,” at the same time that society says, “At least you’re still alive.”
And while I’m about to describe my own disease below; it’s just one example of many diseases that deserve so much more.
We with Ankylosing Spondylitis silently suffer through bone-crushing pain (sometimes that’s actually happening), because so far not many people have chosen to pay attention to our disease.
Our spines can fuse into fragile columns of bone, sometimes crushing our organs as the spine curves downward.
Our ribs get inflamed and restrict our breathing.
Inflammation wreaks havoc on multiple joints and even organs.
If our eyes become inflamed, we risk permanent vision loss if we don’t get treatment fast enough.
Our heart’s parts can become narrowed or inflamed, or both, and kill us.
Our bodies work overtime to fight the inflammation, which leaves us perpetually fatigued.
Pain and stiffness can keep us from healthy sleep, increasing susceptibility to diseases that come with lack of sleep, and damaging our cognitive abilities.
These symptoms and more follow us to our grave. There’s no undoing damage and the treatments can only try to slow it down. We often live in a permanent state of progressive deterioration.
Spondylitis Awareness Month is in April. Arthritis Awareness Month is in May. Yet the world doesn’t turn blue during those months like it turns pink for Breast Cancer.
This is a difficult topic to write about from my position as someone who does not have disease that comes with a fair amount of privilege. What that basically means is that I can’t expect to enter a space where people will (for example):
- know my disease exists
- believe me when I explain how bad the disease is
- accept my suffering at face value and see me
- be compassionate towards me
- have a shirt with my disease on it
- throw a fundraising party to help pay for my medical costs
- ask how they can help
- donate money to an organization that raises awareness for my disease
- shoot arthritis-blue ribbons at me out of a tee-shirt cannon
The topic of cancer as a disease with privilege is polarizing, because it forces us to look at how much *cancer (*most forms) gets in terms of awareness, funding, research, and clinical/medical proficiency, while so-called lesser diseases are overlooked completely when it comes to federal funding or awareness days, weeks, or months.
People think that we’re trivializing the horror of cancer, when all we want is equity. And it wouldn’t hurt to have someone tell us we live with a horrifying disease, too.
I’m not trivializing cancer as a disease. But I do have a problem with the hierarchy of disease attention. Cancer is not the only disease that devastates lives and bodies. The playing field is far from level.
This is a complex topic. Because while I’m crushed by the lack of … well, everything for my disease and other similarly devastating diseases, I also want to acknowledge that everything in the cancer world is not perfect – there’s a hierarchy within the cancer world too. But I’m not a cancer politics expert, so that writing has to be done by those who live in that world.
What I am is part of a marginalized group of diseases and we are begging to be heard.
In many ways we can’t wait until our disease politics get as polarizing and controversial as cancer politics – because then we know:
- We’d have more doctors who knew our diseases in and out
- Our symptoms would be better prioritized by medical staff
- We’d have more medical options tailored to our specific disease type
- Research would see greater profit in finding cures for us because of the popularity of marketing a disease that’s fun to hate
- We’d have greater social recognition of our suffering, and we know we’d face less stigma and blame for our symptoms and incurable disease
If that’s what we get out of massive ribbon campaigns and over-marketed celebrity dinners and controversial races for a cure, then I’ll take it. I’m ready for my disease and other diseases to be as fun to hate as cancer is.
Since this post addresses a hypersensitive topic, I shared it with my good friend and chosen sibling, Vonn Jensen, whose disease advocacy work once focused on breast cancer. While their cancer remains incurable, they watch as billions of dollars are made off of their disease in the form of pink-washing: marketing disguised as helping fight cancer. Vonn now lives with several additional diagnoses, including arthritis, hemochromatosis, and one they will briefly mention below.
We’ve had extensive conversations about the topic of disease privilege and I value their lived experience with breast cancer as an advocate and activist, so I asked if they would be willing to provide some thoughts about what I’ve written, as well as clarify a point I made above regarding a breast cancer statistic. I am grateful they were interested, supportive, and willing to share some of their own story here too. Here are Vonn’s words:
“When I was diagnosed with cancer the world had my back. I had no idea then that cancer, The Big C, came with many privileges that other diseases do not. I began to learn this first from other patient friends who shared their experiences and helped me understand the privilege I had unknowingly benefited from, much like an unearned legacy. This disease privilege becomes painfully clear even still as my medical journey progresses, my health declines, and it does so without these same privileges. When I had cancer, outing myself was my choice, but once I did it people easily accessed compassion for me. This has never been the case with my other diagnoses, the most pressing of which is Tarlov Cyst Disease (TCD). TCD is incurable, progressive, and far more debilitating for me than Cancer is and has been. After I was diagnosed with this incurable spine disease, I came to understand that no one had my back the way they had with Cancer. There were no ribbons plastered across friends’ Facebook profiles with links to fundraisers, there were no grants to help me pay bills, there were no parades championing for a cure (however misguided) or demonstrative displays of personal support. With a disease other than Cancer, it isn’t even a question of ‘Will my friends and family be able to support and care for me,’ it’s ‘Will my friends and family even believe me.’ When people have never heard of my disease before, they may act as though it doesn’t exist, and in this way I feel as though I personally am being erased and invalidated. Cancer was seen as something I would fight and beat, coming out the other side a valorized and heroic figure simply for having survived. While that perception is also inaccurate and misleading, it carries tremendous social currency.
Unlike with Cancer, I struggled for years to get diagnoses to explain my symptoms. Working to find these explanations medically is a full-time job. With TCD I was in pain constantly and began to lose crucial physical functions. The diagnosis of this spine disease happened incidentally when a radiologist noted abnormal growths along my spine visible on MRIs. Despite obvious radiological evidence, I have not been able to see a neurologist for this disease, and most doctors either know nothing or refute that it exists. When I had a Cancer diagnosis it was verified as soon as there was pathological evidence, and I saw a Cancer surgeon within a week. I have never been without health care for Cancer, which had no symptoms. I have never had health care for TCD, the symptoms of which are similar to Multiple Sclerosis (MS).
When I tell people that I am a Cancer patient I am generally met with compassion and even a sort of reverence. If I say that I have degenerative spine disease I am met with cynicism and a complete lack of care. This is largely the reason that I have never before publicly named TCD, and there are still others I have yet to name. In this way I have another privilege: I can out myself with whichever disease I think will best enable me to get the care I need in a given moment.
I worked for years as an advocate for metastatic breast cancer, or MBC. MBC is the only type of breast cancer that is terminal, and I have lost hundreds of friends to MBC, including one just three days ago. I now advocate for a broader array of disease and do so through the lens of social justice first and foremost. I know that what I believe is a polemic and unpopular opinion, but it is my felt experience and not speaking to that is killing me. If you ask me what is worse, chronic or terminal illness, I will tell you that it is chronic illness. There is no end date to chronic disease; instead there is a rapid decline with no escape route or exit. There is rarely even compassion.
If I could choose between Cancer and my other diagnoses, I would choose Cancer in a heartbeat, albeit an arrhythmic one. I speak only for myself, but I also know from direct conversations with friends that many others with multiple diagnoses feel quite similarly.
With Cancer there was a treatment plan. It was terrifying and overwhelming, but it was knowable. Now I witness my body losing function as my central nervous system is strangled at an exponential rate. I have no treatment plan, no specialist to form one with, and no idea how quickly my spine will deteriorate, taking my quality of life with it.
The main physical symptom of Tarlov Cyst Disease is pain, and there is no evidence to suggest it will ever get any better. As a Cancer Patient I am bestowed with the term “survivor” like a prize for simply not dying. In this light I am seen as having won a battle over disease simply because I am still alive. Now living with chronic disease so intimately linked to physical pain makes the prize look more like a booby trap. I am ensnared and there is no viable option out.
The privilege afforded me as a Cancer Patient does not cross over to other diseases. I cannot take that privilege with me unless I utilize the word “cancer” or otherwise align myself with it. As a Cancer Patient I was valorized, called a hero, followed by media outlets, given donations, etc. Now I find myself shunned by my Cancer friends if I try and talk about my other much more debilitating diseases.
Perhaps the symptom which feels most debilitating and painful of all is isolation.”
Note from Charis: I’d like to mention that the post you’ve just read more clearly illustrates the point I was attempting to make with a post I wrote a couple years ago: There Are Worse Things Than Cancer.
If you found this post useful in some way, please consider supporting this writing with a $3 tip at ko-fi.com/beingcharis. Make sure you mention this post with your tip so I can send half of the total to Vonn.