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10 (Wrong) Things People Somehow Still Believe About Women With Chronic Illnesses

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You truly can’t tell how sick someone is just by looking at them. But so many female patients can think of a time when they were dismissed, not taken seriously or given the wrong medical care because of misconceptions about how illnesses present in women and how sick women “should” act.

This isn’t to say men with chronic illnesses don’t face their own challenges. They do! (And men, if you’re reading this, we’d love for you to share some of the frustrations you’ve experienced in the comments below.)

But today, we wanted to highlight some of the specific misconceptions that female patients deal with, and set the record straight. These stereotypes have real-life consequences — too many women have been given the wrong diagnosis, no diagnosis at all or the wrong treatment because of incorrect assumptions made about them. So below you’ll find 10 (incorrect) things people somehow still believe about women with chronic illness — and the truth. With the help of our Mighty community, we break down the frustrating misconceptions.

1. Young women don’t get chronic illnesses.

The truth: You can develop a chronic illness at any age — you can be in your 20s, a teenager or even younger and still be sick. In fact, some illnesses are even more common among younger women in their childbearing years, like autoimmune disease. Illnesses of the reproductive system, like endometriosis, are typically first felt during a woman’s younger years. Bottom line, it’s simply not true that young women don’t get chronic illnesses.

“I think the biggest misconception may be that young women (like girls in their teens) can’t be sick. I’m 19 and have been sick since I was around 16. Invisible illness truly is invisible, and maybe even more so being young,” said Abigail Delan. “Also that being young I *must* (can you sense the sarcasm) be exaggerating my symptoms.”

2. When women talk about their health problems, they over-exaggerate how bad it is.

The truth: It’s offensive to think “over-exaggerating” pain is just “part of being a woman.” When a woman says she is in pain, believe her. It’s all too common for women’s pain to not be taken seriously, and then it’s discovered they were having serious health complications.

“[I’m] constantly being told that I’m a hypochondriac or over-exaggerating my symptoms when often I don’t tell people how bad things really are. Women aren’t taken as seriously by medical professionals or society in general and this leads to diagnostic delays and no emotional support for patients,” said Jill Fuersich.

“The misconception that since we are women, we are more emotional and thus have a tendency to ‘milk’ our afflictions and make them seem worse than they really are. This couldn’t be further from the truth,” said Tonya Mae Wilson. “It’s women who carry and deliver babies, deal with endometriosis, cysts, fibroids and horrible cramping month after month and we still have to function as the mother when we catch cold or flu viruses. We kick butt and take names! So if we have an ailment, listen up!”

3. Women’s health problems can be solved by losing weight or getting more exercise.

The truth: While some health issues are helped through diet and exercise, many chronic illnesses aren’t — for example, genetic conditions can’t be “cured” by exercising more. If losing weight or exercising hasn’t helped, doctors should explore other treatments.

“I was told by a doctor if I didn’t lose weight I would be dead by the age of 35, and that all my symptoms would stop. Well, I lost weight and was even worse than when I weighed more,” said Ashley Coleman. “Can’t cure a genetic condition by losing weight.”

“‘You just need to exercise.’ Well I tried that, it made it worse because it turns out I have POTS and I need a specialized exercise regimen and I need to take it super slow and exercising can literally take all of my energy for the day,” said Sarah Clemmons. “I can’t get up early, exercise and go to work. It’s either work or exercise.”

4. Women have a low pain tolerance.

The truth: It’s difficult to research if men or women “tolerate” pain better than the other, since gender stereotypes may influence how men and women report their own pain. But the more important thing to remember is that every person experiences pain differently and every experience is valid. Just because you don’t understand how or why a woman can be in so much pain, that doesn’t mean she simply “isn’t good at handling pain” and doesn’t really have anything wrong with her. If a woman is in pain, that means something is wrong that deserves attention.

“‘You just have a low pain tolerance.’ Excuse me. I would like to see you deal with the level of pain we deal with on a sometimes daily basis and then come back and say that to me again. My pain tolerance level is most likely a lot higher than the average person’s,” said Jaymee Westover.

5. Women’s physical symptoms are actually emotional symptoms or caused by psychological conditions and stress.

The truth: Throughout history, women have been diagnosed with “hysteria” or told their physical symptoms are due to mental illness. While your mental health can affect how you feel physically, we now know that chronic conditions like Crohn’s disease, endometriosis, autoimmune disease, etc. are not caused by underlying psychological conditions. It is important to treat any mental health issues women have, but we cannot assume their other illnesses will then “go away.” (And just because you can’t figure out the cause of a woman’s symptoms, that doesn’t necessarily mean the issue is psychological!)

“[People think] any emotional changes (which can be literal symptoms of the disease) are psychological… I’m talking to the point where underlying problems get left undiagnosed and psychological disorders are assumed,” said Alane Perry.

“[People think] they’re only sick because they stress and worry too much. All of their healthy stress has suddenly produced massive health problems and that’s why they’re sick,” said Reannah Horton. “They’re essentially bringing on themselves because they can’t learn to relax.”

“I once had a female doctor address my mother during an appointment and tell her that I was just hysterical, and wasn’t in as much pain as I described. I didn’t go back for another appointment,” Courtney McNamara said.

6. Your symptoms are just a normal part of your period (and getting pregnant will fix it).

The truth: Not all pain women experience can be attributed to their periods, and even if pain is caused by a woman’s period, that doesn’t necessarily mean what she’s feeling is normal. Also, while some women do experience a degree of remission while they are pregnant (for example, multiple sclerosis symptoms may improve during pregnancy), it’s inappropriate and unhelpful to tell a woman all she needs to do to fix her illness is to get pregnant.

“A misconstrued aspect of chronic illness with endometriosis and adenomyosis is that ‘it’s just period cramps, every lady has them and you should just tough it out, it can’t be that bad.’ But it really is that bad,” explained Jodi Nesbitt. “It is a life-changing disease that is not only painful but mentally and emotionally damaging. Especially when there is very little validation for what you go through with the disease.”

“[People think] getting pregnant would fix my health issues when in reality I would have to slowly stop taking meds to even attempt getting pregnant, while personally I am single and even if I wasn’t I’d have to consider the genetic components of my disease and being able to care for a child,” said Jocelyn Cook. “Also, my illnesses are far too complex and more likely exacerbated by the stress pregnancy would cause my body than be helped by it.”

7. Your boyfriend, father or husband’s perspective on your illness is more reliable.

The truth: Women know their own bodies best and should be trusted. They shouldn’t need to have a man with them in order to be taken seriously. Their male relatives don’t have a better understanding of their illness than they do.

“I’ve had doctors look to my husband to verify things that I’ve said about my own experience. I’ve also had one ignore my questions and then point to my husband when he asked one and say to me, ‘Now that is a good question.’ I’ve heard this from other women, too,” said Ashley Farren. “Our husbands are apparently more reliable sources of both information and rationality/practicality than we are.”

8. If you “look good,” you must not be sick.

The truth: Many women with chronic illnesses don’t “look” sick, but that doesn’t mean they aren’t in pain. Just because an illness doesn’t produce outward symptoms that are clearly visible, that doesn’t mean it isn’t serious. And just because a woman is wearing makeup or a nice outfit, that doesn’t mean she doesn’t feel sick.

“[A misconception is that] if you are wearing makeup and have done your hair then there is nothing wrong with you,” said Becky Wearmouth.

“‘Get dressed up. Do your hair. Go to the mall. You will feel better.’ Said to me by my doctor,” said Lori Blythe.

“[People think] because I’m young and ‘look good’ I can’t be as sick as I say and must be faking it,” explained Christine Smithers. “An older woman said about me, ‘No one can look that good and be in that much pain. No one can have that many conditions.’”

9. You’re not a good mom if you can’t do things with your child that other parents can.

The truth: Mom guilt is real, and even women with chronic illnesses themselves may struggle to feel like “good moms.” But the truth is that you can still be a great mom even if you can’t go to every soccer game or make a home-cooked meal every night. You can still raise happy, successful, compassionate kids.

“[A misconception is] we can’t be good mums, that we’ll somehow ruin our children’s lives by not being able to do everything ‘normal’ mums can. My 11-year-old daughter does sometimes have to help me but she’s also one of the most articulate young women I know,” said Danielle Coughlan. “She’s empathetic and sticks up for others when she feels they’re being let down in some way. She’s also sarcastic and feisty and I wouldn’t change any of that for the world. In some ways I’m glad I have fibromyalgia because that’s what has helped her become that amazing young woman.”

10. If you feel OK one day, then you’re “not really that sick.”

The truth: Chronic illnesses change frequently. You might feel great one day, and then crash the next. You can feel OK sometimes and still have a chronic illness, and people shouldn’t use that to justify giving you a hard time about what they’re able (and not able) to do on a given day.

“[A misconception is] if you’re OK at one minute, you’ll be OK the next or for the rest of the day. Chronic illnesses don’t work like that, it’s a minute to minute thing,” said Carly Paris.

Remember: A person’s gender should never be used to question or doubt the symptoms they’re feeling. Remember that you can’t always “see” someone’s illness, and just because you don’t understand it doesn’t mean it’s not real.

Originally published: June 14, 2018
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