13 Women & Non-Binary People With Chronic Illnesses Share How They Get Through Their Worst Days
Living with a chronic illness can feel impossible at times. Many people with chronic illnesses put on a brave face but are suffering more than many people could imagine inside. There are days when it feels impossible to get out of bed, but they learn to push through.
What makes things more difficult is that women and non-binary people with chronic illnesses are often dismissed, doubted, and patient-blamed by their doctors and even their loved ones. In addition, these populations also tend to suffer from health issues that are under-researched and poorly understood.
"Conditions that disproportionately affect women — particularly chronic, non-life-threatening but disabling conditions with subjective symptoms, like pain and fatigue — have been woefully neglected in the research realm," Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, tells Bustle. "Consequently, they remain very poorly understood — and therefore poorly treated. A large proportion of women's disproportionate burden of illness is attributable to autoimmune disorders, chronic pain disorders, and other relatively under-researched female-predominate conditions."
Here's how some women and non-binary people with chronic illnesses get through their worst days. Maybe their strategies will help you, too, if you're suffering from a chronic illness or want to support a loved one who is.
1. Mykki, 35: Ehlers-Danlos Syndrome
"If my pain is a standard pain scale 8, my go-to is going to be some sort of distraction (usually a video game or a writing/art project video game or a writing/art project if my hands are up for it), coupled with my pain medication, heat/cold, topical analgesics for local pain, and some fuzzy socks/pajamas. If it goes up to a standard 9, I do the same things but spend more time actively resting and sleeping when I need to. Being in that kind of pain is exhausting on the mid-level pain days, let alone the higher pain days.
Once I hit a standard 10, things change. I'm usually sobbing and desperately trying to find relief because my body feels like it's on fire and bruised head to toe. On those days, I'll use every topical I can that doesn't conflict with another, I'll try desperately to find comfort in bed, or I'll crawl into our shower and sit there to see if the heat will help the pain die down."
2. Maggie, 35: Lupus
"Morning is when I discover where my pain is — it could be in my hands, elbows, knees, feet, etc., and so I have to figure out how to adjust to it by wearing clothes that are comfortable in strategic places and easy to put on. I also carry fewer items in my workbag to lessen shoulder pain. Lately I've been wearing running shoes and changing into more professional-looking Oxfords or boots in my office. I keep a small collection of shoes under my desk!
My fatigue can be a real obstacle, often resulting from poor sleep due to joint pain. When teaching, I have to stand a lot, and I try as much as possible to take short sitting breaks and to move around so that my joints don't get too stiff as that only makes the pain worse.
My partner and I currently teach at the same university, and it is enormously helpful to have him there for carpooling and motivating me to get up and out of the house. He also does most of the dinner prep in our household. This makes my daily life significantly easier. It means that I can come home from a full day at work and, most of the time, not have to worry about having the energy to make dinner. So that's another thing that helps me get through the more difficult days."
3. Jade, 23: Pancreatitis
"I have constantly battled with my weight since my diagnosis and have been 'underweight' since I was 16. Losing weight and not being able to gain it back has always bothered me, as I find it lifts the veil on the invisibility of my illness. There are days when I don’t want to go out with friends, I don’t want to participate in my life because I feel like I look sick. Until recently, I spent most of these days in bed, watching reality TV and upping my anxiety meds to cope.
I’ve since discovered blue mascara. There is something about putting on colorful makeup, blue mascara or hot pink eyeliner, or learning new braids to put in my hair that makes me feel human, not masking my sickness just having fun despite it. Certainly, I don’t want to leave the impression that not looking ill is of any merit to the outside world, but it does lift my spirits and help me feel whole while I down my bottles of Ensure on the way out of the house."
4. Suzanne, 28: Chronic Migraines
"If my short-term memory goes offline and I and start hallucinating or vomiting or any other number of Migraine Hell symptoms (there are so many it looks like the Crowley contract from Supernatural some days), then I have to write the 'Sorry I'm dying,' email and let my clients know that I may be a day behind schedule. I always tell them that I will try to make up the time as best as I can to get the manuscript done without throwing off someone's publishing schedule.
However, this is life with a chronic illness — my life is not my own and I don't have full control over it anymore. Since last year, it is now a byline in my freelance contract. The exact line states: 'In the case of a medical emergency, the author or the editor may ask for a deadline extension.'
Once the email is sent, I force myself to go lie down in my bedroom, with only my yellow lights on, usually force down a cup of peppermint tea to get something in my stomach (nausea and loss of appetite are very common), pop two Excedrin (it often doesn't work, but I have to try), and cuddle my cat and listen to podcasts."
5. Corii, 27: Fibromyalgia, Chronic Pain Syndrome, Chronic Fatigue Syndrome, And Major Arthritis
"Some days I can do light yoga or take a few hot baths and be able to function for bits at a time. Most bad pain days require medication. I'm prescribed Norco and muscle relaxers for these days. Whatever the medicine doesn't take care of, I have to just bear it.
The absolute worst days, I am completely bedridden, sometimes writhing in pain, crying, sweating, you name it. If I can move to get into the tub and have someone to help me, I do that, along with painkillers. There's also a lot of thought involved with getting through the worst pain days. Knowing that it will pass, learning how to move your body so that it hurts less, and remembering that in the moment, even focusing on chanting a mantra to myself helps make things more bearable.
Most people think that these illnesses are in our mind, and that's just not it. They're very real, but training your mind in a certain manner can definitely help make the worse days better."
6. Joy, 49: Rheumatoid Arthritis And Common Variable Immunodeficiency
"Life gets narrowed down to essentials when you get sick. Staying employed so I have health insurance and taking care of my kids were the only truly important things initially. And staying consistent with treatment and doctors' appointments and daily meds, of course. I've completely changed my professional activities to accommodate my illness, so I rarely have to just power through anymore, sobbing in the shower because of the pain caused by shampooing my hair, but it occasionally still happens.
Sometimes, I collapse, call in sick, and sleep 14 hours. I've managed not to need hospitalization so far, but things are only this good because of how ridiculously fortunate I am."
7. Samantha, 27: Crohn's Disease
"I get through my worst days with a heavy dose of self-care. Some days, that's a hot bath and a book. Other days, it's as simple as the escapism of an easy-to-watch reality show like Nailed It. I tend to isolate myself as to not burden anyone on my bad days, so it's important to me to have coping mechanisms that I can partake in without help."
8. Julia, 21: Vasculitis
"What gets me through my worst days, which include frequent hospital visits and many days in bed, is knowing my dog Lucky would be confused and devastated if I don't make it. He was my rock and my constant companion when I was bedridden for six months last year, and I don't know if I could've pushed through without him."
9. Mollie, 26: Undifferentiated Spondyloarthritis
"Sometimes, the worst days are simply frustrating, and sometimes, they're downright devastating because I know that I will be in pain for the rest of my life. So, I start by reminding myself of things that are familiar and good. I open the windows and I wash my face. I make some warm toast and I take the medication that saves my life. I'll throw on an episode of my favorite podcast and have a good snuggle sesh with my dog.
And even if I have to cancel my obligations for that day, I make sure to talk to my close friends, especially those that also have chronic illness, because not only do they understand these days, but they remind me that I have value and I have worth even when I don't feel like it. I tell myself throughout the day that 'this is just a bad day, not a bad life.' And more often than not, the next day is better. Sometimes, you stumble across a day where things change for you or you find some new hope to savor, and it makes the worst days worth persevering."
10. Paige, 21: Ulcerative Colitis
Sometimes, my worse days feel like they’re never going to end. They can be filled with countless runs to the bathroom, migraines, fatigue, stomach pain, etc. For me, the easiest way to deal with it is to remember that each day ends and a new one will begin tomorrow. As much as it sucks, this is my reality! My bad days are usually filled with self-care: a bubble bath, lots of water, hot tea, snacks, and a good movie. Your body will react to how you treat it, so I try to treat mine as kindly as possible."
11. Brianne, 32: Chronic Lyme Disease
"I get through my worst days with cannabis and romance novel audiobooks. If I've been sleeping poorly and my body feels slow, hollow, and my lymph nodes are throbbing, then I'll try to reset the day by forcing myself to nap with CBD, melatonin, and a book on a sleep timer.
On days when I feel rested but the nerve pain in my arms makes it painful to use my hands, I’ll opt for THC and a murder mystery marathon to pass the time until my arms are happier again. For me, the hardest part is reining in stray thoughts about how these bad days could become my new normal."
12. Laura, 36: Endometriosis
"One of the biggest revelations I have had in managing my endometriosis is to give myself permission to slow down. I was always an over-achiever, weight training in the gym every day and burning the social candle at both ends before I got sick. For a long time, I tried to carry on living a 'normal' life in an effort to not let my illness define me, but in reality this just wasn't achievable.
Slowing down has enabled me to listen to my body. On my worst days, I now cancel plans, rather than battling through the pain. I often take a bath, try and eat some food that I know won't upset my stomach, take pain medication, and settle down with a good book. By doing this I know I can bounce back much quicker."
13. Bridget: 26, Vestibulodynia
"For my worst pain days, I spend the day in bed with my heating pad and Netflix. On bad days, movement and tight fitting clothes make my pain worse, so rest aside from what I have to do is best. Take a warm Epsom salt bath, often with a glass of wine. CBD lube or Valium suppository to help reduce the pain. Cry. It took me a long time to find out the source of my pain, and this is true even now, after I have proper treatment. Reach out to friends and family who know about my condition and can talk me through it."
These people set a good example for how to handle your worst days with a chronic illness: Be gentle with yourself, get the care you need, and don't be afraid to ask for help.