If you’re on social media, it may seem like every other day is an awareness day for a different disease. Diabetes, Alzheimer’s, cancer, and heart disease, for example, get a lot of media coverage. There are awareness months, well-attended charity walks, ribbons, fundraising merchandise, perhaps a celebrity spokesperson. If you suffer from one of these diseases, this is great news — awareness helps raise money and fund research to improve treatment and find a cure.
But what about the more invisible illnesses that millions of people suffer from? Diseases or illnesses that are chronic, but often invisible or misunderstood by the rest of the world? To complicate matters, these illnesses are often misdiagnosed or go undiagnosed because of overlapping or inconsistent symptoms or problems with testing. Unfortunately, this complicates understanding of these illnesses and further inhibits progress toward treatment and cures.
5 Common Invisible Illnesses
Lupus is an autoimmune disease where the immune system attacks the body, causing inflammation, swelling, and pain. There are a variety of symptoms, some of which are visible (rash), some of which are not (chronic fatigue, joint pain, flu-like fevers, internal organ complications).
Number affected: Approximately 1.5 million Americans
Why lupus is difficult to diagnosis: There are no widely accepted rules for diagnosis, and there isn’t a single blood test to make a diagnosis. Because symptoms are often intermittent, doctors can overlook or miss symptoms.
Resource: Lupus Foundation of America
Crohn’s disease is a chronic inflammatory disease of the digestive tract. Symptoms can vary and change over time, but often include abdominal pain and diarrhea (sometimes bloody), fatigue, and weight loss.
Number affected: Approximately 780,000 Americans
Why Crohn’s disease is difficult to diagnose: There isn’t a single test that can diagnose Crohn’s disease. In addition, Crohn’s shares many symptoms with those of other health problems.
Resource: Crohn’s and Colitis Foundation
Lyme disease is a bacterial disease caused by a bite from an infected black-legged or deer tick. Early symptoms include a bullseye rash, fever, headache, stiff neck, chills, muscle and joint pain, fatigue, and swollen lymph nodes. Later symptoms can include nerve pain, arthritis, facial palsy, severe headaches and neck stiffness, dizziness, heart palpitations, inflammation of the brain and spinal cord.
Number affected: Approximately 300,000 Americans are diagnosed every year
Why Lyme disease is difficult to diagnose: Early symptoms can appear anywhere from 3 to 30 days after a bite and often mimic flu symptoms. In addition, many times, people aren’t even aware they were bitten. The reliability of testing is controversial, as there is a high incidence of false negatives.1
Fibromyalgia is a chronic disorder characterized by muscle pain and tenderness, fatigue, as well as sleep, memory, and mood issues.
Number affected: Roughly 4 million people in the United States
Why fibromyalgia is difficult to diagnose: Symptoms are subjective and there isn’t any official test for fibromyalgia. Combined with the fact that there isn’t a clear cause of the disorder, fibromyalgia is often misunderstood or misdiagnosed as another disease. In addition, in the past there was a stigma surrounding the disorder, which often increased patients’ risk for anxiety and depression, further exacerbating symptoms.
Resource: National Fibromyalgia Association
Endometriosis is a disorder in which tissue similar to the lining in the uterus (the endometrium) grows outside the uterus, oftentimes on the ovaries, fallopian tubes, and tissue around the uterus and ovaries. Symptoms include pelvic pain, cramping, excessive menstrual bleeding, pain during intercourse, and infertility.
Number affected: 5 million American women
Why endometriosis is difficult to diagnose: Endometriosis is sometimes confused with other conditions that can cause pelvic pain, including pelvic inflammatory disease (PID), irritable bowel syndrome (IBS), irritable bladder, or ovarian cysts. In addition, some medical professionals have downplayed symptoms, attributing them to “severe periods.”
Resource: Endometriosis Foundation of America
There are numerous other invisible illnesses/disabilities that affect millions of Americans. From mental illness, to chronic fatigue syndrome, to migraines, many of these illnesses present the same challenges that the above conditions do.
The Importance of Advocating for Yourself
If you suffer from an invisible illness (or suspect that you do), it can be frustrating and discouraging to navigate the medical landscape. Misunderstanding, misdiagnoses, stigma, and controversy can exacerbate your pain and make you more susceptible to anxiety and depression.
Listen to your body and advocate for yourself. If something doesn’t seem right, don’t hesitate to bring it to your doctor’s attention. If your doctor doesn’t listen to you, or brushes off your pain, find a new doctor. It’s also helpful to keep track of your symptoms, including the date and time they occurred, duration of your symptoms, as well as the circumstances surrounding your symptoms (including sleeping and eating patterns). Also include as much detail as possible about the location and severity of your symptoms. Keep good records and bring them to every doctor’s appointment — the more information your doctor has, the better.
And finally, continue to speak out and educate others about your disease. The only way to overcome misinformation, misdiagnoses, misunderstanding, and stigma is through knowledge.