6 Reasons Chronic Illness Misdiagnoses Make Understanding Your Body Confusing

It’s no secret that living with chronic illness can be an often unpredictable journey on its own. Symptoms fluctuate, day-to-day life is ever changing and so on. But when you add misdiagnosis as a factor, that leads to more confusion about your own body and experiences that can have lasting consequences.

Since there are a multitude of effects stemming from misdiagnosis, we asked The Mighty community about their experiences and crafted a list of ways misdiagnosis — and their medical doctors — impacted their understanding of their body and health condition.

Here’s what the community told us:

1. Dismissed experiences can lead to uncertainty about symptoms.

Even if you do not have a medical degree yourself, you know your body best. So when a doctor assigns a diagnosis that seems to oversimplify what could be going on, that would no doubt be an invalidating experience. As a result, you may become uncertain about what symptoms you experience.

I was told my years of GI issues and lower abdominal pain were IBS. Nothing ever showed up on colonoscopies, ultrasounds or any other scans. It wasn’t until this abdominal pain started spreading into my pelvis and hips that I was diagnosed with endometriosis. One visit with my OBGYN, a new form of birth control, and boom, I was on the mend. To think, if my doctors had taken the time to listen to me, instead of just dismissing my symptoms as common IBS, or the result of anxiety and depression, I could have been this way a lot sooner. — Samantha V.

2. Being told ‘it’s all in your head’ causes pain in more ways than one.

One of the worst feelings is when a doctor chalks up the root cause of your symptoms to mental illness. As with many other experiences in this list, it can leave you feeling invalidated. Gaslighting in the medical field is real, and it can come at the cost of your own sense of security.

I had excruciating facial pain. Saw a specialist and kept getting told it was muscle pain from anxiety. Turned out to be trigeminal neuralgia. Thank goodness for second opinions. I’m now mostly pain free. However, in the period of misdiagnosis, I was shattered because I knew it wasn’t ’just muscle pain.’ — Mikayla C.

At a specialty children’s hospital, I was told that the pain I was experiencing was not from my scoliosis and was all in my head. I was advised to see a psychologist and not a pain management doctor. As an adult with worsening pain, I was finally diagnosed with fibromyalgia. — Katrina J.

3. Blaming superficial issues may deflect from what your body is going through.

When a doctor doesn’t want to dig deeper and explore what may be happening to your body, they may attribute whatever is actually going on with your undiagnosed chronic illness to something, perhaps, irrelevant. This may hit on sensitive areas for some individuals, such as their weight.

I was told my gastrointestinal issues were caused by obesity and that I could cure it by losing weight. Three years later I ended up in the ER with severe abdominal pain and found out I had an infected gallbladder that was starting to rot. So I ended up having emergency surgery. — Clarissa D.

I had lower back pain. I was told I was fat for seven years. Turns out I have ankylosing spondylitis and I have permanent damage. Some days I can’t walk. I don’t know what the next day will bring or when I will lose mobility. — Jennifer C.

I was told I had bad posture, needed to lose weight or it was in my head. Turns out it was spondylitis! — Fiona C.

4. Invalidation by medical professionals creates a lack of trust.

Doctors are our first line of understanding when something doesn’t feel right. It is oftentimes crushing when they either don’t believe what you say or brush off what you are trying to convey — and this usually leads to a sense of distrust and even apprehension with seeking care in the first place.

I was initially diagnosed with undifferentiated connective tissue disease, and when I asked if we can look further and do more tests — because I truly felt I had lupus — my rheumatologist said, ‘What’s the point? The treatment will be the same.’ I was annoyed with that answer.… I sought the opinion of three additional rheumatologists over the next eight years — all of whom confirmed I have lupus. — Cob SH

I was diagnosed with migraine. The medications did absolutely nothing, and the pain and everything else was basically non-stop. Doctors just sent me away time and time again. I had to quit my job and move in with my parents, as I was barely functioning. Close to a year after all of this, a new doctor decided to update my MRI just in case. Turned out it was hydrocephalus all that time. It was so bad by then the surgeon told me I had a week or two before I ended up in a coma! — Laura C.

5. The emotional toll is immense.

Even if you aren’t explicitly told “it’s all in your head,” the emotional repercussions can stay with you for a long time. Being misdiagnosed and given false information by medical professionals increases that emotional toll.

I was told that endometriosis was just, y’know, not liking sex very much. I was 20 and it messed me up for a long time. — Gabbie J

6. Simply not knowing is enough to make you confused.

On its own, not having an explanation for why something is happening to your body creates confusion and even insecurity. Beyond this, however, lack of treatment due to misdiagnosis or inaction by medical professionals may lead to medical complications down the road.

I was misdiagnosed after medical malpractice had taken place. … I had to start questioning my own care for my illnesses and I overthink every little symptom making sure I never end up in the same type of situation. I also question doctors a lot more and make sure they have my input in my care to make sure they don’t put me there again. — Brittany A.

Living a struggling life is already difficult enough, but living a miserable life because doctors missed the diagnosis is inexcusable. Children and teenagers don’t just have ‘growing pains’ for a straight 10 years. We need doctors to own up to their mistakes and take the time to research the symptoms and listen to their patients. — Katrina J.

I kept telling them something wasn’t right but it took over a year and a trip with the ambulance to the ER to get the right diagnosis. I never had a TIA, I had a stroke and had scar tissue on my brain. The best chance at recovery is in the first year after a stroke and I was more than a year along. In the end I got a little better but I would’ve been much better if my diagnosis would’ve been right the first time. — Marianne V. 

The overarching theme: Wishing to understand what is happening to your own body.

There should be nothing wrong with the desire to know what the cause of your symptoms and illness(es) are; it should not be shamed but instead normalized. From The Mighty community, Cob SH summarized the point of seeking answers beautifully:

The point was being able to know and understand what was going on inside of me; the point was giving me the correct diagnosis in case specific medications emerge; the point is giving me a community in which I belonged and have the same symptoms so I could find support to cope.

If you have been misdiagnosed, let us know about your experience in the comments.