Invisible Illnesses: Transforming Self-Care into Collective Care

I was thinking about it the other day, and I think it is finally time to tell a story. For those of you who don’t know me, I’m Open Care’s ethnographer — I have been reading everyone’s stories, growing increasingly more inspired, and making sure that the important connections you all are making do not get lost. A lot of the time, ethnographers consider themselves to be research instruments – so maybe think of me as another technology, like the platform itself or the cool visualisations the research team has been producing :slight_smile:

But it has become increasingly difficult for me to feel I am fulfilliing my role as an ethnographer, because one of the central tenets of ethnographic practice is participant-observation. Now, I’ve certainly done plenty of observing. But I think I have been dropping the ball slightly on the participant part! Talking about my own positionality is important to making sure that I am filtering everyone else’s through lenses that don’t distort them.

So here’s one of my Open Care stories.

I have two related questions: how do we care for people in our communities who aren’t visibly ill, yet whose lives are made more difficult by invisible illnesses keeping them from living life the way they want to? And how can we look outside current medical frameworks to help people whose illnesses haven’t been successfully helped by existing medical frameworks? This issue of invisible illness particularly affects labor, which as many of you have noted, is both a crucial part of what it means to be human (working on things that enrich us, feeling like we have autonomy and are masters of our own destiny) but also something that can cause us pain (when we have to do jobs we don’t like, or can’t find employment in this rapidly changing world).

These questions hit particularly close to home for me. I suffer from vestibular migraines (also called migraine-associated vertigo). This means that about three out of seven days a week, I feel dizzy for part or all of the day. If you’ve ever felt motion sick, you’ll be able to understand the feeling, although it’s difficult to describe if you haven’t. The way I often laughingly put it: It’s like being drunk, but without the fun parts. During these episodes, I am very nauseated and is really unpleasant to look at screens, read, or generally do anything except stare at a wall. Sometimes the episodes will be extreme: like the whole world is spinning, and I can’t tell which way is up.

When this first started happening, about a year ago, it was terrifying. I would panic, which would make it much worse.

In the first six months, I tried everything. I went to my GP, who referred me to an Ear, Nose, and Throat specialist (ENT). I had to wait months to see her, and she ran all kinds of tests on me: I was put in a dark room, spun around in a chair, water was ran through my ears. Inconclusive— I had inner ear damage, yet my body was correcting for it. I was referred on to a neurologist (another long waiting period), who told me that vertigo is really hard to do anything about. She diagnosed me with vestibular migraines, and then proceeded to try out 5 separate drugs over 5 months. For weeks I’d try something new, have terrible side effects, without improvement. I learned that most drugs have side effects, and a lot of drugs are used to treat secondary conditions but the primary use has serious effects (they tried anti-depressants, which can help but made me feel awful, for example).

Finally, after 2 trips to the emergency room in 2 months, she recommended I try a blood pressure medication. That was the last straw for me---- I looked at the bottle, read the side effects (I already had low blood pressure— so the side effects were, you won’t believe it, DIZZINESS). I decided to give up on medication for a while. I want to add here that most of this journey took place in the USA, so the medical bills were beginning to pile up.

So I turned to the internet, and found many people suffering like me, without help from medication, and with the same exact symptoms. I don’t have any wonder cure to report here---- but it was nice to know that other people were there, and were also frustrated by the medical system. I also took solace in my family in the times I was able to see them, who would come and sit with me when an episode hit. Talking to others, taking my mind off of it, helped.

But one of the hardest things was not wanting to tell people, because I didn’t want them to see me differently or treat me like I was infirm. I didn’t want to lose my job, and I didn’t want my PhD supervisors to stop pushing me and giving me new opportunities. I felt that short-term illnesses people are compassionate about, but when there is no end in sight, eventually your lowered performance is no longer a case for compassion, regardless of the cause. I empathised with this position, knowing how frustrating it would be to have a colleague or a friend who disappeared for days at a time. Perhaps most of all, I didn’t want anyone to treat me like I was disabled. I didn’t want anyone to treat me differently at all, and I wanted their expectations of me to remain high.

On the other hand, my illness was invisible. No one could see my suffering, so no one knew to reach out and help. Sometimes we do need to be treated differently, and sometimes we just can’t go it alone. I told my supervisor at last, and told him that I wanted to move back to the UK — my home, and a place which, though the medical system was struggling, had universal healthcare and wouldn’t charge me to get the help I could need in the future. I wouldn’t have to be scared to go to the emergency room after a day of excruciating pain and nausea. So he ended up supporting me immensely with my goal of transferring my PhD, and I’m moving back soon.

I’ve started down a new path, now. I don’t know if it will be helpful, but I’m starting to acknowledge that I might never be “cured,” and that maybe that rhetoric ignores the way that most people with illnesses end up living their lives despite it, rather than conquering it. I think there are a lot of us out there learning how to live in peace with our unruly bodies, and I have found a lot of support and solidarity from friends, who after I confide in them, end up telling me secrets of their own. One has IBS, and has near-constant stomach problems. She told me a story: I don’t think of myself as disabled, I think of my body as a Maserati. Sure, I have to be really careful about what I fill myself up with, but that’s because my body is a luxury car! I laughed when she said it, and I carry that story with me. I am filling up my arsenal with other stories of resilience in spite of medical systems which offer no answers, or the wrong ones, and in spite of bodies that don’t behave.

I have also learned to be mindful of the fact that other people around me are probably struggling with something they’re not saying. I don’t give angry looks at people on the tube who sit in priority seats---- what do I know about their conditions? Instead of being upset with friends who cancel plans, or co-workers who seem to show up less, I give them the benefit of the doubt. Who knows what they’re dealing with.

All in all, I see the stories I have heard as an ethnographer in past projects on technology and health and social care with new eyes, and I feel more strongly about projects to build social solidarity and informal networks more than ever. I for one will continue to do research and publish on these issues, and help design better systems. People are the answer. Keep up the good work, everyone :slight_smile:

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Another invisible one: celiac disease

Hey you.

My hairstylist who is a colleague from highschool suffers from celiac disease, the worst form… a lifetime condition that he discovered at 19 after being prescribed many expensive drugs against a supposed allergy.

He got better over the years but of course had to accept that he might never be “cured”, just like you say. He can’t eat out, like ever, but got better at managing his appetite for the forbidden.

However, I feel that it did isolate him quite a bit - to give you an example, he wasnt able to go to the highschool 10 year reunion because there was no point sitting at a festive table for a day and eating bananas… while watching others stuffing up.

This disease being much rarer in his city than, say in the US, it is much more difficult to find acceptance and support in the infrastructure around. Lack of infrastructure in turn translates into people being oblivious to this… so unintendedly cant really support much unless they’re close and witness what the disease really means, develop empathy and ways to show it, and so on.

Thank you for sharing this, Amelia. It is really an eye opener.

So true

Celiac is a really good example. As you aptly point out, he problem with invisible illnesses is that it makes people want to disappear even more. Like your friend who didn’t want to go to the reunion.

without knowledge about these kinds of things, people can’t help— as you say, they are oblivious. So the infrastructures don’t get built, and people stay invisible. I think it has to be a two way task-- people seeking to become more informed so they can be supportive , and people with invisible illnesses being willing to talk about them. Building a world without fear is tough but worth it.

I needed to hear this.

Hi @Amelia,

Thanks for sharing that. I suffer similar symptoms, but less frequent,  and have become skilled at playing down the symptoms due to the stigma attached. When the pain is less than 6 out of 10, I work and close my eyes when I get the chance. Causes could stem from the fact that I’ve had a few notable head traumas, but I’m not sure, more likey to be food related in my case. Doctors diagnosis is migrane, broad ranging and I’ve had no specific ENT tests.

Pain meds kind of work if I get it in time. I’ve done the vipassana meditation course. It isn’t for “fixing” migranes, but it showed me the things I’ve been doing wrong and gave me some tools that, to be honest, I haven’t been utilizing properly. It’s described as a “surgical procedure”, which I thought was a bit dramatic until I tired the technique. It’s not for everyone and shouldn’t be taken lightly. I’m very glad I done it though.

I grew up with processed food and have been trying to get away from it. I have a sugar addiction. Growing food helped me improve my diet and lifestyle, but I still have way to go. If I cut out processed foods, maintain regular exercise and daily meditative practice I think I can stay pain-free. I definitely wouldn’t have written this in a public forum if it wasn’t for your post, so thank you, it’s given me the reminder I need to write food plans and stick to them. I hope we find pathways out of pain.

Solidarity, friend!

Nice to virtually meet you, @Bernard – and thanks for sharing, too. I think the more we talk openly, the more we start to understand how to support one another. I have been thinking, for example, of shifting my vocabulary from “I’m here for you” to “I’m here with you.” Rather than putting the onus on the other person to articulate their needs, trying to be more active and supportive of my own accord.

I am also currently working on food — I’m trying to improve my overall nutrition, and lower my stress, in the hope that it will help. It certainly can’t hurt. Elimination diets are tricky things, though, since our bodies are complicated systems. I too have been slipping food-wise lately as I’ve been travelling. We can both take this opportunity to re-up committments to healthier practices. Let’s carry on down the path :slight_smile:

Likewise.

I agree, “I’m here with you” is more incluisive in language, situation and energy. I like that.

I try to eat as much seasonal glyphosphate-free veg as possible and change shopping habits. When I’ve a headache I whatever takes least amount of strength; doughnuts, choclate and something fizzy for comfort. But maybe the comfort is important too? Kolcaba, 1976ish - “3 stages of Comfort; relief, ease, transcendance.” :slight_smile:

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… and pretty soon it’s everyone.

I have been very fortunate with my health, but as I advance into middle age I become less tough. The price I pay for any deviation from healthy lifestyle, especially eating, got so high that I just moved away almost completely from alcohol and sugar. Despite this, I am getting other bugs: lower back pains, as the bad posture of a former musician catches up with me, and a tendency to put on weight that used not to be there.

I am not sick. But I am getting old. My capabilities are becoming limited: just as Noemi’s hair stylist does not go to formal dinners, no point for me going to rave parties – I just can’t take this anymore. This stuff will get worse and worse, and eventually my wetware will crash completely. In the mean time, like any old-timer, I still need to go about the world, and work and play with people of any age. Some of these people will not have the same limitation as I. This raises the issue of stigma (as @Bernard says) and relating across the limitation gap. Paradoxically, older people can even have it easier than people in @Amelia 's or Bernard’s condition in that we give visual cues as to our condition: we look older. But that does not mean much anymore. There are people in my running club who look (and are) pretty old, but are amazingly fit.

Which means the effects of an actual medical condition are a darker shade of those of simply being less-than-peak fit. Which means, again, there are no “healthy people” and “patients”, but only humans in different conditions.

Still fits my friend’s car metaphor

The older your car gets, the more you have to care for it. And outlook matters---- you can either see your body as a rusty clunker, or as an old Mustang that needs more TLC than it used to :slight_smile:

I think that your categorisation helps (not splitting people into “healthy” and "patients) because it allows us to see ourselves on more of a continuum, and have a more expansive notion of health. A lot of it is about reforming our cultural notions. Money factors in here as well---- you have to have money to pay for your upkeep. It’s medically known that the less financial resources you have, the easier it is to have more health issues (see the double burden of obesity and malnutrition on the poor for example). In short, we have to look at the larger structural conditions and people’s surrounding communities, rather than seeing people as singular patients. Hence a lot of Open Carer’s focus on prevention and improving the environment (both human and natural) rather than interactions in a clinic.

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Changing the way we think of care

Thanks for the article!  At Woodbine we’ve been having a similar topic, trying to untangle what care could mean in the context of our evolving situation.  Especially in the field of mental health, this invisibility becomes unbearable for some.  Living here in NYC, anxiety and depression are a chronic condition for most people, but there is neither the time nor space to devle into these topics. Worst yet, the stigma of talking about these things is so taboo, even though they are a natural and approrpriate reaction to the chaos around us.  In addition, as was pointed out, our bodies are in a constant state of change and death is the only end point.  So how can we change our view of health as being the abscense of disease to a more fluid and compassionate view?  We think it must come from community and reconnecting with energies larger than ourselves, such as the land.

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Mental health is a great example, since such an overwhelming amount of people suffer from things like anxiety and depression (as you mention).

I was reminded of your comment because for me, this past summer, it has exactly been through “connecting with energies larger than myself” that I have started to learn how to dwell with my condition. There’s this Rumi poem that I love that I am trying to embrace:

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

There’s something about the metaphor of a guest house that gets me, as well. Perhaps its the openness to the world, or the hint of community that it invokes.
@noemi, I feel like you might enjoy this poem as well.

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Thanks for sharing your personal story, it is super meaningful. For many of us who are involved with PMS, we suffer from health conditions that impact our ability to fully participate in other forms of activism. For some of us, these conditions could be said to have developed out of participation in collective struggles, where the participants were not familiar with how to take care of one another. Or, put another way, we got left behind. We allowed ourselves to believe that our symptoms were instead weaknesses that needed to be pushed through. We didn’t pay attention to our own bodies screaming at us.

For us, it is imperative to understand new ways of caring for one another that can be practically applied for groups. It is one thing to critique the existing system and to talk about what else is needed, but it is another thing entirely to actually make shit together and try it out. That’s what we’re trying to do. One of those things is our accountability model, which we hope to share more in Brussels with all of you.

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ping @tneh - you would enjoy this post I believe…
It was really great talking to you at the festival <3