22 Patients With Chronic Conditions Are Sharing The Symptoms They Assumed Were Totally "Normal" Before They Got A Diagnosis

Yahoo

2 days ago

If you have a chronic condition, you know that the symptoms can range from classic to complicated. You might be well-acquainted with common symptoms like tightness or tingling (or maybe not!), but even for people who've been diagnosed for what seems like forever, there are still some symptoms you might think are totally normal for years.
Halfpoint Images / Getty Images, Sergio Mendoza Hochmann / Getty Images
So, in the interest of shedding some light on people's illnesses, I decided to ask people in the BuzzFeed Community to share the things about their chronic conditions they assumed were "normal" until a diagnosis told them otherwise. Here are their answers:
1."Way back when, I had awful pain during my period. I was 16 when my mom took me to a OBGYN. He gave me a patronizing smile and told me it was because 'you don't want to be a woman. It will go away when you have a baby.'"
"No — it was endometriosis and it didn't go away after I had my baby. It went away after a hysterectomy.
Then I developed general pain, sometimes bad. Many more doctor trips, wrong diagnoses, skeptical looks, and suggestions I was malingering. No — turns out I have fibromyalgia. Why, when a doctor doesn't know the answer, is it always the patient's fault somehow? Dr. God, you'd be a lot more believable if you were human enough to say, 'I don't know.'"
—Anonymous
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2."For decades, I suffered from lower back pain, more significant upon first waking. I was told for all of those years it was normal, until one GP finally listened and ordered a blood test. A simple blood test that any doctor over the decades could have ordered could have saved me from a lifetime of pain."
"The test looked for a genetic marker called HLA-B27 and showed I carry the trait for ankylosis spondylitis. Look it up, it fucking sucks.
The disease actually presents in the teen years. Had doctors in the '80s actually listened instead of looking down from their high horses and exclaiming their superior intellect, I wouldn't be in daily debilitating pain."
—bubblykid17
3."I've had arthritis since I was a kid, about 11-12 years old. When it first started, my mom took me to the doctor, where they patted us both on the head and said it was nothing more than growing pains."
"Then my knees would dislocate, which required a brutally painful trip to the ER to realign them.
My first surgery was when I was 12 or 13. I'm now 52, and have had six knee surgeries, and basically need them both replaced. My ankles, hips, and shoulders can get pretty painful as well. And let's add menopause to the mix, because the lack of collagen and joint lubrication makes all that worse, ugh.
I will say that being in pain for so long has taught me how to listen to my body and figure out a way to tune out the everyday aches and pains. I don't notice a lot of it anymore, but getting older has definitely made me sometimes feel like a baby, because I have days where I'm a total bitch or just want to cry from it.
It's sad to know how much of an advocate for yourself you need to be."
—icycake215
4."I thought all the pain at the sites where I'd previously had surgeries was old age, and that my sudden memory loss and hair falling out in clumps were sure signs of rapid aging."
"I thought especially that whole-body weakness and fatigue were from getting old.
But everything happened all at once over a few weeks' time; that was surprising.
Yup, COVID."
—billarnold65
5."Feeling like I was going to pass out after riding elevators/escalators. I've been having some weird symptoms for 15 years, and in 2023, I got a POTS diagnosis."
"I found out after joining some support groups that you aren't supposed to be dizzy after riding them! I thought everyone felt that way after getting off them!"
—sophiesmama
6."I thought stomach pains, bowel movements only one to two times per week, and straining with bowel movements was normal. It was chronic constipation."
—maskedfish29
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7."I had low back pain for over 10 years because I listened to those who said, 'We all have back pain,' and, 'wait as long as you can before surgery.'"
"I just got my spinal fusion last month for my disc degenerative disease/compressed disc. I should have never waited this long, because it only got worse for my back and legs. I couldn't lift things or walk as much as I used to."
—maskedfish29
8."From about the age of 13, I started experiencing debilitating pain with my periods. It started with cramps that kept me from functioning; like, heating-pad-and-meds-every-four-hours-on-the couch kind of pain. My doctor put me on birth control and said that was all he could do."
"Fast forward to my late 20s. I decided to stop taking birth control since I wasn't dating and hated the way it made me feel. Within a year, my regular intense pain had ramped up to being so severe that I would vomit at least once a period from the pain. I was in the early stages of a new career, so I worked through it.
Cue the last stage. My ovary ruptured, and I bled internally for hours while the hospital tried to figure out what was wrong. A surgeon finally got to me and cleaned it up. She told me that I had the worst case of endometriosis she'd ever seen and didn't understand how I was functioning. I'd just gotten used to it because no doctor would do more than shrug and go, 'Women have pain with their periods.'"
—magicalshield808
9."Visual snow. I constantly see floaters, even if I close my eyes; I can still see colors and everything clearly, but it's like having TV static in front of it (also when my eyes are closed). I always thought my vision was pretty normal. I didn't find out I had it until I was 17."
—bandteacher24
10."I thought being exhausted to the point where I couldn't get through the day in my mid-20s was normal. I thought the constant back and shoulder pain was something everyone dealt with and chalked it up to getting older."
"I went to several doctors who told me to take a nap and take Tylenol, so I stopped going to doctors because it seemed that this was normal. I went to another doctor for something unrelated, and we started discussing my debilitating pain and utter exhaustion, and she looked at me like I had three heads and told me none of this was normal.
She ordered extensive blood work, MRIs, CT scans, X-rays, the works, and we found out that I have fibromyalgia.
Unfortunately, the symptoms are very much still there, but we treat them and I do get a good deal of relief. Sadly, there is no cure, and I had to go five years from onset until diagnosis before I got a doctor to help me who actually took me seriously."
—grumpygiant13
11."I just ran out of air, so it became work to walk, and work trying to control breathing when it got difficult. Eventually, I collapsed. Diagnosis: stage 4 lung cancer."
—Anonymous
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12."A few years back, I became progressively tired, lightheaded, and headache-y. The walk from my car to my office building made me out of breath. In the evenings, I felt feverish but didn't have a fever, and I struggled to stay awake past 8 p.m."
"I thought I was just overweight, out of shape, sleep deprived, and depressed; all things that were true. When I finally went to see a doctor, I cried because I was certain they would tell me to toughen up, and my boss would think I was faking.
My doctor took blood and sent me home until she got the results; she called me later that night and told me to go to the ER right away, because I was severely anemic. One unit of blood and four days later, I was discharged with a diagnosis of low iron anemia and a prescription for Ferrous Sulfate. Now, I pay more attention if my body tells me something is wrong!"
—kathryndownard
13."Hypothyroidism and chronic migraine checking in. I said to a friend while discussing headaches, 'You know how whenever you pause for a second you realize you have a headache?' They did not know."
"I also didn't realize that needing multiple naps a day and being able to fall asleep anytime, anywhere wasn't normal. I took daily naps at my desk in a brightly lit, open-plan office during my lunch break. Took a nap in an Uber Pool once, don't recommend."
—leopoldevertonthefourth
14."I've had headaches three to four times a week ever since I can remember. I thought everyone walked around with headaches several times a week and just dealt with the eye-watering pain, thinking I needed to drink more water. OTC medications didn't help at all."
"After kid number three, when they started to get more intense, my husband insisted I go to see a neurologist to get my headaches checked out.
Turns out I've had chronic migraines since I was a kid. After a lengthy process of finding a preventative medication that works for me, I now have three to four migraines a month, vs. three to four a week untreated. I never realized how physically and emotionally draining my chronic pain was until it was finally treated. I have so much more energy, capacity, and patience now."
—Anonymous
15."I get chest pains daily. Sometimes they're sharp, shooting pains, but normally they're mild. I brushed it off as second puberty until one day I also couldn't breathe or feel my left shoulder or upper arm."
"I went to urgent care because I thought I had a mini heart attack. Diagnosis: anxiety.
Before y'all say that doesn't count as a chronic illness: this is something I have to deal with every second of every day, and it causes a lot of physical pain and sickness."
—magicalgoose32
16."I never understood the 'don't lock your knees because you'll pass out' thing. Turns out I have Elhers-Danlos syndrome. MY knees go way past locking and allow for blood flow to return. I can stand for a very long time with my knees 'locked.'"
—Anonymous
17."I grew up with really bad "growing pains" in my hips and knees which I just assumed everybody went through. (It didn't help that doctors said that too.) I also had cool party tricks where I could bend my body in weird ways and freak people out."
"It wasn't until my early 30s, after dealing with increasing pain that continues to affect my mobility, that I got diagnosed with hypermobility spectrum disorder and found out I have defective collagen. Turns out being a human elastic band isn't normal!"
—chilladmiral347
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18."I thought it was normal to stand up and have my vision go completely black and get super, super dizzy. I really pushed for a diagnosis because I was a server and my managers DID NOT respect that I couldn't do stairs. Finally got diagnosed with POTS."
—Anonymous
19."I've had lower back pain for two years now and leg pain for almost six months. Basically, I walk with a cane. I've tried physical therapy and pain management, and neither helped."
"They did an MRI and found I have tethered cord syndrome; basically, the spinal cord should be free, but mine is tethered to tissue. It's rarely diagnosed in adults. It explains so many of my medical issues. I most likely have to get surgery for them to de-tether the cord."
—thelandmermaid
20."I thought it was normal to feel tired and sick and foggy every day of my life. Turns out I've had Lyme Disease since I was 17."
—Anonymous
21."Endometriosis. Years of being told 'it's just cramps' and little to no support even after a surgical diagnosis. I've had four surgeries now, including a hysterectomy, and still struggle with pain monthly. On top of it all, I've developed a stomach ulcer from years of ibuprofen use. Sometimes even the diagnosis isn't helpful. Women's health needs more research!"
—Anonymous
22."I used to have to be careful how big the bite of food I took was, and get food to go down with liquids. And every time I swallowed, I could feel the food scrape all the way down to my stomach."
"I think over the years it crept up on me, so I thought it was just normal.
It was OK until eventually I could not swallow certain foods. I got a throat scope, and they found I have eosinophilic esophagitis and a throat the size of a pencil.
The doctors were amazed I could eat at all! Now, after getting my throat stretched and medications, I am able to eat more normally and no longer feel food go all the way down. But I do have to take a weekly shot for the rest of my life."
—peacefulcoyote70
"I've had eosinophilic esophagitis since I was a kid, but wasn't officially diagnosed until a year or two ago. I thought it was normal to always feel nauseated in my throat. People didn't understand when I would say that my stomach was hungry, but my throat felt sick. It's still an ongoing struggle, but meds have helped."
—jonny82
If you have an experience of your own to share, I'd love to hear about it. Or, if you want to write in but prefer to stay anonymous, check out the form below!
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