29 Women On What They Wish People Understood About Their Chronic Illnesses
Women with chronic illnesses are a misunderstood group. After months or years of dealing with doctors who don't believe them, they often continue facing doubt and dismissiveness from their own friends and family. Many people don't understand the constant challenges of living with a chronic illness, and women especially often have to fight for people to take their illnesses seriously.
"Unknowingly, our loved ones and friends infantilize us and make us feel like infants incapable of handling our lives... and, in reality, they don't know what our health issues and pain do to us," Kirsten Schultz, founder of Chronic Sex, tells Bustle. "While not a lot on their own, as singular comments, these microaggressions add up. Messages that portray people with a chronic illness or disability as pitiful or evil pervade society from movies to the news and more. Sadly, the stress and frustration from encountering these ideas everywhere we look can worsen our physical and mental health. It's a large part of why we may get frustrated more easily or snap back at a well-meaning suggestion."
So that people can better support those with chronic illnesses, I asked 29 women with chronic illnesses what they wish those around them understood. Here's what they said.
1. Abbey, 28, Chronic Atypical Migraine With Aura, PCOS, Anxiety
"That it doesn’t go away! And equally that I am not prepared, nor is it good for me, to be constantly occupied with being 'cured.' It is hard to say that I don’t want suggestions about what to do, but quite frankly, I don’t. I have researched this more than anyone, I know my own body, and I know what my options are. I have accepted I will be ill forever and that there are consequences to that. I just wish everybody else did, too, instead of constantly feeling the need to tell me their views on how I can get better or why I am sick in the first place."
2. Jessica, 32, Hashimoto’s Disease
"Mostly, that chronic illness can affect every organ system in the body. Some are worse than others, even if they have the same disease."
3. Mila, 21, Irritable Bowel Syndrome
"That IBS is not just a throwaway or mild diagnosis — it can be a debilitating illness that affects every aspect of your health and life, and it’s not always possible to solve it through diet, medication, and other lifestyle changes. People who struggle with IBS are valid members of the chronic illness community."
4. Morgan, 44, Ehlers–Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS)
"That my sadness (not depression) is caused by my inability to do the things I love. I mourn for what I had and have lost. Envy for lost activities with friends and family."
5. Maggie, 35, Lupus
"That my pain can really fluctuate. I can have mobility issues one day and walk four miles the next day. I also 'power through' pain a lot. Often I may be active (traveling) and productive (getting a lot of writing done), but this doesn't mean that I am 'well' and that I am not suffering from physical symptoms the whole time."
6. Rochelle, 28, Endometriosis
"That my pain is constant. It’s always there, no matter how ‘well’ I am pretending to be that day. Some days — even hours — it is more bearable, and sometimes it is harder to deal with, which of course affects my mood. And though I work full time, I have been advised not to by all of my doctors, so when I say I am too sick to go to work or that I need to cancel plans, I really do need to just completely rest."
7. Sarah, 24, Juvenile Idiopathic Arthritis And Irritable Bowel Syndrome
"I may not look like someone you perceive to be 'sick,' but my insides are screaming in pain every day. Sometimes, I can’t get dressed, eat regular food, or speak. It’s even worse when you live alone. It’s important to me when someone asks to help or takes charge to help — but not oversteps. I still like to be able to do things on my own. But it’s nice when someone recognizes I’m hurting and doesn’t make me feel bad about it by just helping."
8. Courtney, 41, Neurocardiogenic Syncope, Premature Ventricular Contrations, Chronic Sinusitis, Hypermobility, Scoliosis, Arthritis
"I don't always look or act ill. There are some seasons when I rarely look or act ill. But still, I am chronically ill, and it affects me every day. Don't judge me by my good days, weeks, months. Don't judge me for my good days, weeks, months."
9. Caitlyn, 28, Interstitial Cystitis
"Once I was approved for disability, people told me they were jealous because I could stay home all day and get paid. Let me tell you, there is nothing glamorous about living off of $800/month, especially while your friends are posting their accomplishments on Instagram. I miss working."
10. Mollie, 25, Arthritis, Asthma, Major Depressive Disorder, Generalized Anxiety Disorder, PTSD
"Nobody chooses this."
11. Kathryn, 33, Hypermobility Syndrome, Generalized Anxiety Disorder, POTS, Underactive Thyroid
"I’ll always put on a brave face and smile, and it may be hard to remember, but I am struggling. You just can’t see it."
12. Arabella, 24, POTS
"That doctors don't know everything either. Just because I've been fortunate and privileged enough to see as many doctors as I have, that doesn't mean my quality of life is better. The majority of doctors I've seen don't even believe POTS is real. The other half don't know how to treat it and manage my health. POTS affects my whole body. It is a spectrum illness and effects everyone differently, so some people with POTS are higher functioning than others and some are bedbound. It's a serious illness. I wish more people would take it seriously, and I wish they taught about it more throughly in the medical field. I wish more people knew that just because I have a diagnosis, my journey hasn't ended."
13. Ellis, 24, Fibromyalgia And POTS
"You don’t have to look sick to be sick. When you’re constantly in pain, sometimes you make an extra effort to look good in order to feel better about yourself, and people use that as a way to say that you must not really be sick. I wish people would stop doubting those with chronic illness and instead take the time to try and understand our struggles and frustration. We may not look sick, but we feel it."
14. Caitlyn, 30, Fibromyalgia
"It's really the fatigue more than the pain that interferes with my day-to-day life. I've gone about my day and had perfectly pleasant conversations while dealing with the kind of pain that would send a normal person screaming to the ER, but there's no 'sucking it up' or 'pushing through' fatigue. It's all-encompassing. And because I spend so much of my time struggling to get or stay upright, I have about half as many usable hours in my day as a healthy person has in theirs."
15. Jennifer, 36, Vulvodynia
"I am in pain even though you can't see it. The emotional struggle. The exhaustion. I feel left behind."
16. Emily, 23, Undiagnosed
"I wish people knew how much damage your chronic physical illness does to your mental health. You start being afraid to ask for help because you know you always need help. You feel isolated, guilty, depressed. It’s so much more than aches and pains."
17. Mairead, 30, Thyrotropinoma
"People don't get that I only have so much energy and need to pace myself. Even when I warn friends or family that I won't be able to keep up with all their plans and will need to plan some time for me to rest or sit things out, often people don't understand — and sometimes even become frustrated or complain that I'm being difficult or fussy. I understand that it's difficult for people to appreciate what it's like unless they've been through something similar, but it can be so frustrating when people tell you to 'power through' something — when in fact you've been 'powering through' for the past couple of hours and now you've literally got nothing left."
18. Rebecka, 29, Epilepsy
"How to handle a seizure. And we are not tired or lazy; it's the strong medicine which we have to take every day."
19. Hollin, 54, Myalgic Encephalopathy/Chronic Fatigue Syndrome
"I wish people understood that ME/CFS never feels 'normal,' even after many years. We feel ill — as if we have the flu — every single day, with the same level of distress that people without ME/CFS feel when they are sick."
20. Nina, 46, Chronic Lyme Disease And Coinfections
"The need to be able to change plans/not make plans because of unpredictable capacity from one day/hour to the next."
21. Emma, 18, Chronic Sarcoidosis
"Not all disabilities and chronic illnesses are visible at first glance."
22. Shelby, 22, Narcolepsy, POTS, hEDS, Migraines
"Just because you can’t see it doesn’t mean I’m faking or my pain/symptoms isn’t as bad as I say it is."
23. Mary Ellen, 35, Multiple Sclerosis
"I wish people understand that just because I don’t look sick in the way that they expect doesn’t mean I am able-bodied. MS is often invisible, and even those closest to me underestimate how much of a toll it’s taking on me, resulting in a pressure to perform my sickness to the degree that they will take it seriously (which makes me feel so phony, and I wish I was believed without having to 'prove' I’m dealing with vision loss or mobility impairment)."
24. Joy, 49, Rheumatoid Arthritis, Common Variable Immune Deficiency
"I wish people ever considered invisible disabilities before complaining about a stranger, that friends and families better understood energy limits, and that newly diagnosed people could understand and believe that their life can change in drastic and unforeseen ways, mostly negative and painful, and still be a fabulous life worth living."
25. Kristen, 21, Spondyloarthritis
"That my pain isn’t going away; even if I’m not talking about it, I’m in pain. It is a filter that changes all my experiences and makes all other problems or inconveniences exponentially worse."
26. Angela, 59, Chronic Lyme Disease
"That I really am sick. When they see me from time to time, it's because I am having a 'good' day and have probably been in bed for days or weeks prior to this outing. I will probably [be] in bed for days afterwards as well."
27. Marissa, 23, Endometriosis, Adenomyosis, Interstitial Cystitis
"Just because I've had excision surgery/am on medication/'look healthy' on the outside does not mean that I don't have bad pain days or my illness doesn't inform my everyday existence."
29. Em, 39, Hypermobility Syndrome And POTS
"That I am functioning disabled. I can do things others do, but it takes more time to accomplish and more rest for my body to recover. The smallest tasks can cause injury, but that won’t stop me trying to do them, nor should it. I live with pain, I tread a delicate balance with it. When it’s too much, I stop. I need help and understanding when that happens. I still have a life to live and I’m going to do that with or without another’s support, but it’s easier with it."
28. Nicky, 29, Candida/Chronic Yeast Infection
"That it is ‘invisible’, and just because I look like I’m functioning doesn’t mean I am not privately suffering and just able to give the appearance of being normal."
Together, all of these quotes convey the message: Believe people with chronic illnesses. Take their illnesses seriously. Understand how much they're going through. Listen to them.