7 Things to Know About Chronic Illness

January 28, 2021 at 3:12 pm (Uncategorized)

7 Things to Know About Chronic Illness

(from someone who is fat, female, mentally ill, and chronically ill with fibromyalgia including migraines)

  1. Medical gaslighting is a huge issue, especially for women (especially pregnant women, fat women, mentally ill women, those who struggle to communicate clearly in English, and most of all women of colour). ‘Gaslighting’ means convincing someone that something true is not true eg When a patient reports severe pain but a doctor tells them the pain is normal (because the doctor doesn’t immediately find an easy solution either due to laziness, lack of knowledge, or unconscious bias against women/chronically ill people/people of colour/etc). 

This is often literally fatal. Women of colour are the most vulnerable to medical gaslighting, which is a factor in these awful statistics (these are all focusing on Aboriginal people, but you can extrapolate for refugees):       

2. Women’s medical health is poorly studied. Medical researchers are aware that male and female bodies react differently to medication, so a shocking number of trials only study men in order to simplify results. Many medical conditions that are specific to women (eg to do with periods or childbirth) have barely been studied, and chronic diseases like fibromyalgia that effect more women than men are often dismissed as psychological conditions (the modern equivalent of Victorian-Era doctors describing any female patient’s issues as ‘hysteria’). Around 10% of women suffer from endometriosis, a condition in which period tissue grows in or on other organs. It causes extreme pain, infertility, and many other issues. One of my friends had severe endometriosis and was told by her mother and by doctors not to complain so much about her bad periods. When she attempted to have a child in her early twenties, the internal scarring was so severe that she was not able to conceive naturally. That was 100% preventable if anyone had listened to her. It’s not like endometriosis is even rare! And guess what? One of the treatments is COUNSELLING. Do you think doctors would recommend counselling for a broken leg? Another woman I know bled heavily, including clots, from the rectum during every period. A gynaecologist told her that her body was “special and unique” and advised her not to seek further treatment. Rectal bleeding can be a symptom of bowel endometriosis, or bowel cancer.

3. Many so-called “invisible” illnesses such as migraines, chronic fatigue, fibromyalgia, and depression cause weight gain. Some people eat badly in order to deal with constant pain; some have hormonal imbalances; some take medication that causes weight gain; etc. Western society reacts very differently to those who are underweight than those who are overweight. An underweight person is accepted/celebrated (usually—plenty of people feel free to comment on a woman’s “health” aka weight, even if they are complete strangers). An overweight person is always condemned, and that is especially true in the medical community as “concern trolling” is the usual form of fatphobia ie people say they are concerned about a woman’s weight when really they simply dislike looking at her (or are fighting so hard to stay in an acceptable weight range themselves that they cannot cope with someone else being fat and happy). With doctor’s extra power, this gets extremely harmful extremely fast. Personal story: I am unable to diet because it sends my mental health into very dangerous territory within 24 hours. I have had weight-loss surgery (surgery is extremely serious) recommended to me by: several GPs, a diabetes specialist, a neurologist, a dermatologist, nutritionists, and many more. You’ll note that none of them are even surgeons. One side effect of weight loss surgery is that if the patient overeats, they get diarrhea. Since I am highly intolerant of many vegetables due to being intolerant of FODMAPs and salicylates, I get diarrhea a LOT (and all the more if I eat “healthy” food). It would definitely not stop me eating junk food. Yet surgery gets recommended to me by almost every medical professional I see, regardless of their specialty. It is dumb and dangerous. No doctor has ever mentioned to me the dangers of dieting (which are considerable, and far greater than simply being overweight). 

4. For all these reasons, it takes a long, long time to get a diagnosis for any kind of chronic illness (plus I bet doctors would rather it was something neat and solvable). During that time the patient will constantly be exhausted by medical visits and tests while simultaneously being told that they’re just lazy or making it all up. This is also true of neurodiverse conditions such as autism. It is common for a diagnosis to take 5-10 years. So if someone has a chronic illness, (a) Believe and support them unconditionally, including taking them to specialists and probably several specialists in the same field until you find one that actually listens to them. (b) Know that they’re in this for the long haul. Sometimes life just sucks are there aren’t easy answers—especially when someone has been through trauma, and their body has been permanently damaged in a mysterious way as a result. But a diagnosis is worth fighting for IF the patient is physically and psychologically able to fight.

5. Be aware that medical stuff is genuinely terrifying, and exhausting, and that there is often a lot of trauma that comes from merely seeing doctors (or existing in a world that judges a person based on their weight, their poor grooming—because chronically ill people are too tired to look good—their gender, and most of all the colour of their skin.

6. Gotta Catch ‘Em All! Someone with one chronic condition is likely to have (or get) more. The body gets stressed, and it gets sicker in new and exciting ways. When someone with one condition starts thinking they have more than one, they’re not crazy or a hypochondriac or trying to get attention. They’re almost certainly right. (Yes, even the mentally ill ones. We KNOW we’re mentally ill and we’re used to spending every day sorting rational from irrational thoughts.)

7. Disability or chronic illness is not the end of the world. Way too much media says, “I’d rather die than be disabled” and that’s really not helpful! Yes, be sympathetic if someone wants sympathy, but don’t bother ranking whether someone’s life is better or worse overall. I’m clinically depressed and at the same time I’m kind of content and happy with my life. Weird but true. Most of the time, the constant barrage of negative thoughts is something I am strong enough to keep at bay. Most disabled or chronically ill people never get better, and that’s okay. Life can still be good, and the fight to make it a bit better is usually worth it.

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