What To Know About Chronic Illness, From Someone Who Visited 17 Doctors Before A Diagnosis
One of the scariest things about sexism is that it can hurt women's physical health. Doctors are less likely to treat women's pain, health issues that disproportionately affect women are understudied, and studies on health issues affecting multiple genders usually use men as subjects. This means that women with chronic illnesses fight an uphill battle to get diagnosed and treated, often without anyone fighting alongside them.
I saw this for myself this year. In April, I began experiencing a constant feeling like I had to pee, sometimes accompanied by a sharp pain in my bladder. I was diagnosed with interstitial cystitis (IC), a syndrome believed to stem from damage to the bladder lining, and prescribed medication and dietary changes. It seemed to be helping, but then, new symptoms started piling up, seemingly migrating from one body part to the other: forceful heart palpitations, involuntary jerks of my limbs, muscle twitches, tingling and tremors in my hands, a stiff neck, pain in my knees and the soles of my feet. Doctor after doctor said the same things: "Everything looks fine." "It's anxiety." "You're thinking about it too much." "All you can do is take this pill and wait." "It'll go away on its own." So, I told myself I was fine and reassured myself it was just anxiety and took the pills and waited.
But it did not go away. I ended up at my parents' house, unable to work from the fatigue and brain fog. I hoped they would help me, but instead, they said the same things as the doctors: "You need to get your anxiety under control." "You're making too big a deal out of it." "Maybe you need an antidepressant." When my mom yelled at me for seeking answers instead of psychiatric medication, I knew I couldn't rely on my family either. I left home, booked an Airbnb, and dragged myself to my 17th doctor in a year, feeling weak and alone.
It was at that doctor's office that, after 11 months worth of appointments, I learned that all my complaints — the twitches, the palpitations, even the IC — were symptoms of Lyme Disease and got tested to confirmed the diagnosis. Shockingly, the fact that this took me a year makes me one of the lucky ones. Many women take years to get chronic illnesses diagnosed. People with autoimmune diseases, over three quarters of whom are women, take 4.5 years on average to get a diagnosis. Endometriosis, a disease that causes pain during sex and painful periods, takes 9.28 years to diagnose on average.
What's worse is that as we go from doctor to doctor seeking answers, women frequently endure dismissive comments about how it's in our heads, it's anxiety, it's not serious, or we're thinking about it too much. If you don't know what I'm talking about, read women's responses to this Twitter thread about getting chronic illnesses diagnosed and the stories under the hashtag #MyDoctorSaid.
The only thing that kept me strong enough to make it to my seventeenth doctor was hearing the stories of other women who had persevered in the face of these messages. Otherwise, I probably would have brought into my doctors' and parents' consensus that my primary illness was mental illness and that because of that, I could not trust my own perceptions of my body.
If you're a woman experiencing mysterious and debilitating health issues, on the brink of giving up because nobody seems to take your complaints seriously, you should know these nine things.
1. You're In Good Company
Welcome to the club. As lonely as you may feel right now, there are thousands of women in your position. They may not all have the same symptoms or the same health care needs, but what they share is the experience of being doubted, blamed, and dismissed by the people charged with helping them, all while suffering with devastating symptoms.
If you want to feel less alone, you can start by reading Ask Me About My Uterus by Abby Norman or Doing Harm by Maya Dusenbury. Or, if you have a diagnosis, join a Facebook group or another support group dedicated to those with your illness. Even if you have no diagnosis yet, know that while it may feel like you're the only one in the world with your strange set of symptoms, there are many others like you out there, and you will find them some day. You're not alone.
2. It's Not In Your Head
If a doctor can't find a physical problem underlying someone's symptoms, the default conclusion drawn is too often that the real issue is psychological. But only you can say whether you're suffering from any sort of mental illness. And, by the way, even if you do have a mental illness, you can have a physical one as well. Just because your problem isn't showing up on whatever tests were performed doesn't mean it's in your head. You're not imagining your pain, and you did not create it. Even if emotional factors like stress or trauma contributed to your condition, it still is real and needs to be treated.
3. You Know Your Body Best
There are things that no test can measure and no outsider can know, like how severe your pain is and precisely what your symptoms feel like. Because you uniquely have access to this information, you know what's going on in your body more than anyone else. You know, for example, if you're experiencing depression or anxiety or something more. You have intuitive knowledge of your body, while everyone else is just an outsider looking in. You may not be able to definitively diagnose yourself, but you can research your symptoms online and come up with hypotheses and discuss them with healthcare providers. People may try to tell you that because you're not a medical professional, you lack insight into your own condition. Don't let them.
4. You Get To Make Decisions About Your Own Body
As women, we get told in a thousand different ways that our bodies don't belong to us, from rape culture to anti-choice politics. Another way this happens is when medical treatments are pushed on us. Because you know your body best, you know best what is and isn't good for it. If you have concerns about medications or procedures recommended to you, speak up. It's your body, and you get the final say in what happens to it. Other people will have a million different ideas about what will help you, but you need to follow your intuition.
5. It's Not Your Fault
It's common for women seeking treatment for chronic illnesses to experience patient-blaming. If you're overweight, have an active sex life, or have used recreational drugs, for example, some doctors will automatically chalk every symptom up to these factors without any evidence that they're related. These assessments are often inaccurate. More often than not, the patient has done nothing to bring the illness on. And even if they have, they deserve compassion, not blame.
6. There Are People Who Can Help You — You Just Have To Find Them
I realize that my story (and many women's) paints a grim picture of doctors, but all you need in order to get on the road to recovery is one good one. No matter how many doctors you have to see, finding the right one will be worth all the visits, because a correct diagnosis and appropriate treatment plan can change your life. Ask your friends and family for recommendations, do your research, and if one doctor's opinion doesn't satisfy you, get another one. And another. Your health is too important to put in the hands of someone who judges you, dismisses you, or simply doesn't help you.
7. Conventional Medicine Is Not Always The Answer
The approach of conventional MDs, which is usually to prescribe medication to alleviate symptoms, works for some people. It has rarely worked for me. I've benefited more from a combination of holistic treatments including dietary changes, acupuncture, physical therapy, and a supplement regime from a functional medicine doctor, who identified a number of gut health issues contributing to my illness that most doctors don't test for.
People who haven't had success with conventional doctors sometimes find healing in alternative methods like naturopathy, functional medicine, and Chinese medicine. Don't let anyone else tell you what your body needs. Try any and all healing modalities that speak to you, as long as they're safe, and continue with whatever helps you.
8. If You Don't Feel OK, You're Not OK
When medical tests look normal, doctors often reassure patients that they're OK. But if you were OK, you would feel OK. If a symptom is interfering with your quality of life, even if it's not "serious" in a life-threatening sense, it is serious enough to warrant attention, compassion, perseverance, and commitment to recovery, both on your part and on your healthcare providers'. Don't let anyone tell you you're OK when you feel the opposite.
9. You Deserve Complete Health
In the face of all these messages that you're OK or it's in your head or it will go away if you stop thinking about it, it's easy to lose your motivation to get better. After all, fighting past the weakness and exhaustion to see doctor after doctor and complete treatment after treatment can feel impossible even without all that.
But health is not an area of your life where you can afford to settle. You'll be able to accomplish so much more, to live so much more, once your body and mind are well. Don't let your doctors, your family, your friends, or anyone give up on you. And more importantly, don't give up on yourself.
Seeking healing within a system that's dysfunctional for everyone and biased against people like you is among life's most trying experiences, but it's also among the most empowering. Advocating for yourself puts you in touch with self-love and inner wisdom that you may not have known you possessed, and that will always stay with you.
Many women have gone down this path before you, and many have made it out. And you can do it too.