You know what pisses me off? Whenever there’s a medical condition that primarily affects women, it’s taken less seriously than other health issues.
I’ve heard dozens of stories from women I care about who have had to campaign to have their medical concerns addressed. From abdominal pain that ended up being an ectopic pregnancy to an unbearable headache that turned out to be meningitis, it’s ridiculous that we have to beg doctors (and our friends and family members) to believe us when we tell them that something is wrong.
It’s even more difficult for women who have medical problems that aren’t visible. Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a debilitating illness that, according to the CDC, affects anywhere from 836,000 to 2.5 million Americans. Since there are no definitive tests to determine whether someone has chronic fatigue syndrome, a doctor needs to be thorough and thoughtful in their evaluation of the patient to make the diagnosis.
Unfortunately, not every doctor is that thoughtful. My friend, Cyn, was told that her frequent swollen glands could possibly be her tonsils growing back.
Lisa, a colleague, had people brushing off her concerns. She said that people would always tell her, “welcome to being a mom.” Her son was three years old at that point and she didn’t have any symptoms of chronic fatigue syndrome when he was a newborn.
And let’s talk about those symptoms. It’s much more than just feeling a little tired. According to the Mayo Clinic, symptoms can include the following:
- Loss of memory or concentration
- Sore throat
- Enlarged lymph nodes in your neck or armpits
- Unexplained muscle or joint pain
- Unrefreshing sleep
- Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Lisa knew something was wrong when she realized she was sleeping more than she was awake. In addition to the swollen glands, Cyn would get rashes on her skin that sometimes turned into staph infections. She also suffered from brain fog that would affect her ability to work.
Even still, while going through all of this, both women felt like they had to keep going full steam ahead in work and life. Cyn told me that she didn’t want people to get tired of hearing her talk about it all the time, which was heartbreaking for me to hear as her friend. She is suffering with a chronic illness but doesn’t talk about it because she doesn’t want to get on people’s nerves. That’s just not right.
Through a process of elimination and after many years of visits to the doctor, both Cyn and Lisa were diagnosed with CFS. For Lisa, it was reaffirming to know that she was right. She knew that what she was feeling wasn’t just exhaustion from being a mom. Once she had an answer about what was wrong, she was able to find ways to manage her condition.
Cyn still struggles with the illness, but she has learned how to advocate for herself. If she needs to take a break or rest, she speaks up, regardless of what others might assume about her. She also chooses to be positive. She says, “I want to focus on what’s good in life and what’s happy and brings joy. If every day I talked about the pain or the struggles of getting my job done or any of the other symptoms, I feel like then I’d spend all day every day mired in the negative. It’s up to me to make the best of it and to get the most out of life that I possibly can.”
There are millions of people who have been diagnosed with CFS, so can you imagine how many other people haven’t been diagnosed? I wonder how many other women are suffering alone and defending themselves to people who think they’re being lazy.
Another point that can’t be overlooked? 25% of CFS/ME sufferers are deemed “severely” unwell. There are also people who suffer from CFS/ME that are literally bedridden for years, unable to perform even the most basic tasks without debilitating pain and exhaustion.
My heart breaks for the people who struggle to keep a job, go to school, or just perform basic daily tasks.
It’s hard to keep plans when you can’t get out of bed. It’s tough to study when you literally can’t focus. And then on top of that to have people judging because they think you’re being dramatic and saying it’s “not that bad.”
For a society that loves to romanticize women’s intuition, we tend to ignore women who are actually trusting their gut when it comes to their health. Instead of judging, we need to listen and try to understand when they say something is wrong. We should also reserve judgment about health conditions that we know nothing about.
To find out more about Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, go here.