Though chronic warriors all experience different symptoms and diagnoses, one thing many have in common is the experience of being told your health issues are “no big deal.” Perhaps your doctors weren’t educated about your illness and didn’t see the connection. Maybe they were adhering to the oft-repeated phrase, “When you hear hoofbeats, think horses, not zebras” and assuming your symptoms were due to a less-serious reason. Or maybe your parents and loved ones didn’t understand how much pain you were in and thought you were “exaggerating” or “wanting attention.”
Whatever the reason your symptoms were brushed off, the result is that you may have questioned whether it was “all in your head,” experienced severe, persistent symptoms with unhelpful or no treatment, or felt alone and unsupported in your health journey. We wanted to raise awareness of this all-too-common experience people with chronic illnesses have, so we asked our Mighty community to share a symptom they had that was dismissed as “no big deal” but actually turned out to be a sign of their illness.
Of course, every person’s health journey is different, so if any of these symptoms sound familiar to you, be sure to check with a medical professional and do your own research. But perhaps our community’s experiences can help you feel less alone in your own health battle and show others the importance of taking patients’ symptoms and concerns seriously.
Here’s what our community told us:
1. “Fatigue. It’s all encompassing. Even with fibromyalgia, lupus, rheumatoid arthritis, and a few other diagnoses, they still couldn’t pinpoint why I was so fatigued when treatment was helping every other symptom. Now we are looking into narcolepsy as well. These autoimmune illnesses run in packs, and it sucks.” — Stephanie M.
2. “I had vertigo for almost 20 years before a doctor took me seriously. They always told me I was ‘just dizzy.’ This was because sometimes it was not traditional spinning vertigo, but ‘bobbing’ vertigo where I feel like I’m on a boat at sea for months at a time. Turns out I have Meniere’s disease and Mal de debarquement syndrome.” — Jessy B.
3. “Literally everything. Fatigue, headaches, body aches, insomnia, stomach issues, falling, dizziness, fainting… They called it ‘stress’ for years. Turns out it’s several autoimmune disorders and otherwise chronic conditions. But yeah, ‘mom stress’ is what they tried to leave it at.” — Vanessa B.
4. “As a child, my shoulders, hips, and ankles would sublux almost daily. I had excruciating joint pain and was constantly spraining my wrists and ankles. The doctors always told my parents they were amazed I didn’t break any bones, but my sprains were the worst they’d ever seen. That was in the 1970s and ’80s. Fast forward to now, and two years ago, I was diagnosed with Ehlers-Danlos syndrome. I wish I’d known sooner. I wouldn’t have done all of those ‘party tricks’ with my joints just to freak out my friends.” — Tammy B.
5. “I started getting terrible shoulder pain. I initially thought I had been sleeping funny on it, but I eventually noticed it coincided with my periods. As I have endometriosis, I had a look online if it that could cause shoulder pain and it could! I mentioned it to my GP and he laughed at me and said it ‘definitely had nothing to do with my endometriosis,’ and that was that. But I refused to give up — it was causing me too much distress to ignore it! The next time I saw my endometriosis specialist, I mentioned it to him. He said it could indicate endometriosis on the diaphragm and at my next surgery they discovered some tiny dots of it in that exact place!” — Shireen H.
6. “Constant burning pain. My skin would begin to feel like it was on fire, but at the same, I couldn’t uncover myself due to chills. My skin would turn red, I’d begin sweating. I was told it was because I was ‘panicking,’ to calm down and I’d be better. For years it was put on the sidelines. Little did I know that this was complex regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD) all along.” — Angel D.
7. “When I was 40, I went to my PCP and asked him what was happening to me. I had aches and pains I never had before. He said, ‘Well, you’re 40. Your best years are behind you.’ At 41, I went back to the PCP with 10 red flags for hypothyroidism, and even though my mother was hypo, because my thyroid stimulating hormone (TSH) and (total) T4 hormone were in ‘normal’ range, I was told my symptoms were due to depression! After 15 years of living with varying combinations of extreme fatigue, weight gain, intolerance to cold, joint and muscle pain, palpitations, daily headaches, brain fog, hair loss, etc… I ran my own labs and found out I had hypothyroidism. Three years later, I ran my antibodies and it was clearly Hashimoto’s thyroiditis. All diagnosed with no help from my PCP.” — Denise N.
8. “Fainting, which is the prime indicator of neurocardiogenic syncope. I was told I was ‘crazy’ and stressed by three different doctors. The fourth finally believed me and ordered a tilt test. Turns out my blood pressure was dropping so low that my heart was stopping. It took me four years, but I now feel like I live somewhat normally.” — Reannah H.
9. “Waking up with a stiff lower back. This can be one of the initial signs of rheumatoid arthritis. I’ve had back pain before, so I didn’t think much of it. But this started out of the blue and immediately became an everyday thing. It didn’t matter what I did the day before. It didn’t go away with rest. In fact, the stiffness and pain increased when I took it easy or slept more.” — Christina A.
10. “Excessive daytime sleepiness. I was told to ‘stop staying up so late’ and to ‘create and stick to a sleep routine.’ I did both; neither helped. I was eventually diagnosed with narcolepsy after I fell asleep while driving home one night (friend booked the sleep study for me).” — Michi M.
12. “I was 22 when I started having urinary frequency. I saw many specialists at this time. I was young, so I thought what the doc said was correct. Sadly, they had me convinced it was all in my head. It took a decade, but I finally was diagnosed with severe interstitial cystitis.” — Denise E.
13. “When I was 12, I curiously asked my orthopedic surgeon why some of my fingers get stuck in this funny position. He told me it was called a ‘swan’s neck deformity.’ I later found out he had noted in my chart at that appointment that there was concern for a connective tissue disease, but he never mentioned it. It wasn’t until six years later I first heard the words ‘Ehlers-Danlos syndrome.’ It was just a finger, and then about two dozen other little odd things.” Hailey R.
14. “Debilitating pelvic pain and menstrual cramps. For 22 years I was told ‘just take birth control and it will help.’ Last year I was diagnosed with extensive endometriosis.” — Betsy M.
15. “At 16 I had near constant abdominal cramping, bloody diarrhea, especially right after eating. Gastroenterologist didn’t even do any testing. He told me to take [medication] to soften my stool! Two years later I went to the ‘other’ clinic in town and he found I was loaded with scar tissue and I’d had ulcerative colitis for several years. I think the first gastroenterologist ignored my symptoms because I’m not skinny. I’m 55 now and have no colon or rectum and have a permanent ileostomy from UC.” — Barbara S.
16. “Chronic nausea, vomiting, diarrhea, and severe weight loss was diagnosed as too much stress and IBS. For 12 years, unusual infections that nearly led to death [were dismissed] as just ‘unusual’ because the doctor may have found one other similar case. I vowed to change my diet and reduce my stress. I did my own research and after working with a GI doctor for two years, was diagnosed with common variable immune deficiency. It was the last test he could think to conduct after we had been through the rest.” — Misha H.
17. “Brain fog. People will tell you it’s because you’re a mom or because you’re getting older. You think you’ve lost your mind because sentences and words come out backwards… or you can’t remember a really easy word.” — Josie V.
18. “I would catch colds that always turned into bronchitis and or pneumonia, and they would last two, three, four times longer than everyone else. In high school at 14 I had a bout of double pneumonia that kept reoccurring and had me relapsing to the point where I was on antibiotics for four months, prednisone for six months and had pleurisy for about six months (needing breathing treatments three times a day, special cough pearls, coughed so hard broke all the blood vessels in my eyes, cracked several ribs) and in the end once my respiratory stuff cleared up I ended up in children’s hospital for over a week with C-diff from all the antibiotics. Now with hindsight we know it was my lupus, but I was 14 then and was not diagnosed with lupus until a week before my 24th birthday. It was a huge miss. No one checked my immune system and that was something that happened multiple times.” — Megan E.
20. “Intense pain from the smallest touch. I thought I just had a low pain tolerance, but it turns out I have fibromyalgia.” – Morgan R.