Yesterday, one of my kind neighbours drove me from an acupuncture session back home. Accompanying her was a friend of hers, a young woman (well, I have no idea how old she is, I feel older than most women I meet these days). “This is Amie, who I was telling you about,” my neighbour said – someone else with an ‘invisible’ condition.
I asked Amie what was going on for her. “Oh it’s a very long story,” she said. I smiled. “Don’t worry, mine is endless,” I said. So she told me. And it is a deeply sad story, of someone who has gone through so much, struggled so much, with bizarre and strange and highly debilitating symptoms – including waking up one day to find the skin on her face suddenly droopy – and then the rest of her body following. It’s likely that endocrine issues and pyroluria are a part of what’s going on, but she still has not got to the bottom of it and doctors seem largely unable to help. She’s had to deal with this for so many years, and you’d never know unless you asked. To look at her you’d think she was fine, a bright, funny, gorgeous person.
Amie has found for herself a way of being in the world that helped create at least a small improvement on how it was, step by step, but what a path to walk.
I’ve talked about invisible illness before. I’ve talked about my own physical issues – a lot, lately – maybe too much for most of you reading. But after decades of not writing about what’s going on for me health-wise, this past year of, well, pain and suffering and crushing exhaustion, seems to have pushed me to doing a lot of things I wouldn’t normally do: write more about what’s going on for me, and ask for help – financial help! such a massive step for me to take – and help from neighbours to ferry me to and from various medical and therapeutic appointments.
I already knew I wanted to write this blog but synchronicstically a friend sent me a link to an interview with the poet Meghan O’Rourke, talking about her book, The Invisible Kingdom, Reimagining Chronic Illness. I didn’t know about Meghan, or her book. The interview is great, it’s short and well worth listening to.
Like so many of us with chronic conditions without clear treatments or even diagnoses, Meghan had to become a detective of her illness, and an advocate for herself.
She talks about the additional pitfalls of this approach: “It’s an irony of illness like this that the more invested you get in saying, no, here are all the little problems, and here are the labs that maybe point to it. The more you look like a hypochondriac.” She talks about how much support one needs – and, generally, money, given the lack in healthcare systems for these kinds of conditions. And what if there isn’t support or money? It’s extremely hard. I know all too well how exhausting and often disheartening it is to be my own advocate, to try to find answers.
“You have to have just incredible determination to live with a chronic illness, and in some sense, that’s really the subject of this book that I think I did not understand that before I got sick,” Meghan says.
She also describes some of what the “well” can do to help those who are not – simple things like accompanying them to a doctor’s appointment. And listening. Really listening, not offering advice.
When I shared with Amie about some of my issues and about the vax injuries, she said, “I’m so sorry.” I could tell she meant it. Most people tend to respond with something like It could’ve been worse if you’d caught the virus. Which makes me feel I just can’t talk about what happened to me at all – amongst other reasons which I mention here.
What I’m mostly trying to say is don’t take anyone for granted, don’t assume someone is doing fine just because they look fine.
Many of us will present ourselves one way to the outer world, but at home, in private, it’s another story. I suspect for the chronically ill, the ‘other story’ is usually even more extreme.
Here’s a little of what goes on for me. I wake up after a generally bad night (due to pain and a resurgence of hot flashes after five years of none, or my latest ‘fun’ symptom: my skin feeling like it’s been given a wrist burn, but all over…), I stick on my TENS pads, limp around until the pain eases, feed Ronan, take my various supplements etc, shower, feed myself, stand out in the sun for a few minutes, do a few movements to help my back, and by then I have to lie down again, usually with my ear pressed to a hot water bottle, so there’s that rigmarole. I get up, have some tea, try to check emails (standing, with my little standing laptop riser as I can’t sit for very long), make something to eat, then I have to lie down again (with another hot water bottle). If it’s a relatively “good” day I’ll walk around the block. I haven’t made it to 4000 steps a day yet, but that’s my goal. Many days it’s nothing close.
I might have a little time before supper to stand some more at my desk or I’ll be attending one of my therapeutic or medical sessions. Then it’s supper, and some uncomfortable sitting-up-straight watching TV and then some uncomfortable lying on the couch on my stomach (the only way I can lie without flaring up pain) to watch a little bit more. By 9 pm I’m smashed.
There’s my night time regime of meds and supplements and hot water bottles, shower, then I fall into bed.
What have I done? Virtually nothing. Writing this blog is actually a large undertaking for me.
There is the rest you wouldn’t see:
The past six weeks of having to wash and dress my incision three times a day from my laparoscopic surgery to remove a cyst and ovaries (not to mention having to use other ointments twice a day on other skin conditions, including nappy rash ointment on the blisters caused by using the TENS machine…).
And, I weigh 90 pounds (6.4 stone), when I should weigh 110 at least, but I can’t seem to put on weight in spite of pouring olive oil over everything and eating coconut butter by the spoonful and so on. I wear loose clothing so I look pretty normal, just ‘petite’.
Nor would you see the frequent crying jags when I get so overtired every part of me feels like its screaming. Or the chronic tinnitus in my head that sounds like a cross between a fire alarm and a grater on a violin string. It’s worse when I have a flare-up of ME/CFS malaise (like you’re coming down with flu), usually for at least a couple days each week. And this isn’t the half of it.
As I said, everyone hides aspects of themselves, or aspects are simply not visible, this is not unique to those with invisible illness.
And, there is this added dimension, a weight of carrying years of suffering, of living with conditions that currently aren’t treatable. The weight of staying determined, of not giving up. Of putting on a brave face, as I suspect most people – family and friends even – would struggle to witness ones true face all the time.
But after talking with Amie, and with my kind neighbour who drove, I felt lighter, happier. We laughed about star signs and being a Pluto person, and when I stepped out of the car and took my mask off, Amie said, “Oh, you’re beautiful!”. For a moment it was as if I wasn’t sick, as if I was a normal person.
I had a spring in my step as I walked home.
Previous blogs of mine on my physical situation:
The Unendurable, Part Two
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible
I still need some support, you can find out more here: This is hard