We tend to talk a lot about what happens after we receive a correct diagnosis but what about before? If you live with a chronic condition, your diagnostic journey may not have been as straightforward as you would have liked. Perhaps it took a while to get answers or you might still be looking for a doctor to correctly diagnose you.
Lauren Selfridge, a licensed marriage and family therapist in California, shared that being misdiagnosed and not having the right treatment or support can cause trauma.
“One of the unique things about having challenges with our bodies is that, unlike external stressors, we cannot step away from having a body and all the challenges that go along with having a challenging medical condition,” she said. “We cannot take a break. We tend to want and need assurance that we are doing the best that we can with our health and treatment plans, and that we can trust the diagnoses given to us. Without this reassurance, our minds and bodies can feel unsafe on a very essential level.”
As frustrating as being misdiagnosed can be, sometimes, it’s unavoidable. Your doctor might give the wrong diagnosis because they’ve never encountered your condition before, or there might not be a reliable diagnostic test. If you live in a rural area or don’t have access to a specialist, getting the right diagnosis can be even trickier. Sometimes, landing on the right diagnosis means ruling out other conditions first. Regardless of the reason you were misdiagnosed, the road to getting the right diagnosis is often long and full of frustration.
If you are having a hard time coping, Selfridge suggests finding a support system. She said:
Both emotional support (friends and loved ones really taking in your experience, giving you empathy, cheering you on, and holding hope when yours is running low) and logistical support (researching relevant health topics and medical options, bringing you to appointments, or assisting with managing billing departments and schedules) from the people in your life can go a long way toward giving you enough emotional nourishment and bandwidth to keep going.
Selfridge also recommends finding a psychotherapist who specializes in understanding what you’re going through. Finding someone who works with people who have chronic conditions can be very beneficial. “Don’t be afraid to speak with several clinicians before deciding on someone that feels like the right fit for you,” she said. “It’s important to have a time and place each week where you can truly talk about and process whatever is on your heart and mind without judgment.”
Sometimes doctors get it wrong and while that’s understandable, we’re all human, after all, being misdiagnosed can take its toll. To shed light on how being misdiagnosed can be traumatic, we asked our Mighty community to share their experience.
Here’s what our community had to say:
Being misdiagnosed was traumatic because…
1. I Almost Died
“I was told I had postpartum depression since my symptoms started right after the birth of my last child. I spent many years on a roller coaster of antidepressants, changing them usually about every three months when the latest one hadn’t done a thing. It took me almost dying in an ICU for a doctor to diagnose me with Lupus among other things. I remember right before I finally had a diagnosis and answers to everything going on with me, actually being depressed, ironic right, and crying to my husband in fear they would never figure out what was wrong with me and I was going to die being the crazy lady.” – Brandi D.
“I was told I had growing pains when really I had a cyst on my ovary. I was not given anything to help and ended up collapsing and having a seizure. I was rushed to the hospital in an ambulance, finding out I was in septic shock and my body was shutting down from the cyst and an infection. I found out I have hemorrhagic cyst syndrome. I nearly died at 13 because I wasn’t taken seriously.” – Rachel D.
2. It Delayed Proper Treatment
“It delayed treatment. I have third stage neurological Lyme disease and if I had been diagnosed even a year (or the full six+ years beforehand), I could have started treatment earlier and would have known ways to help my body instead of getting diagnoses with no cure or treatment. And just maybe, it wouldn’t have progressed to the third (and most extreme) stage. I ended up testing myself. There wasn’t a doctor who even thought to look for Lyme disease.” – Liberty R.
“It was several months of delay in treatment and so much frustration that I wasn’t being listened to. I’d had thyroid symptoms before, so I knew what they were like and these were different, so very different.” – Fiona N.
3. It Caused Tons of Anger
“At the age of 12, I was diagnosed with osteoarthritis and overuse injuries. 20 years later, after I wrecked my stomach and intestines with NSAIDS and crazy OTC cocktails, and had more than a few bouts of extremely swollen joints, as well as uveitis that was attributed to a genetic anomaly, I was finally diagnosed with autoimmune arthritis and put on preventive treatment. I try not to imagine how my life would have been different if I would have started preventative treatment 20 years ago because it makes me angry enough that I have to live with this damage.” – Maddi L.
4. There Were Extra Medical Bills
“I lost trust in doctors and my own experiences after four doctors blew me off. Three years later after tons of medical bills, I was diagnosed with lupus, but still cannot find a good rheumatologist.” – Jess K.
5. It Caused Turmoil in My Relationship
“I tested (false) positive for syphilis and because I’ve been married for 15 years, my husband was accused of indecent acts with a diseased hoe. Turns out, he’s not infected and surprise, my mystery symptoms turned out to be lupus. What a whirlwind of pain, emotional and physical. Our relationship is still strained because now, instead of a shot in the butt and we are cured, one of us has a chronic, lifelong disease. We are not dealing well.” – Jaime O.
6. It Caused Depression
“My previous doctor had no clue so it was treated as if it was all in my head. Not many things worse than a doctor shoving pill on top of pill just to shut you up. It finally landed me into depression. A couple good specialists and a new doctor… fibromyalgia, thyroid disease, gluten intolerance, neuropathy PTSD, anxiety, sleep apnea and chronic fatigue. I can now find the tools to battle what I know. Answers give you a change of mindset and relief in knowing that you aren’t just ‘crazy.’” – Lashasta K.
7. I Had to Move
“They first said I had lupus, so I had to move from a warm dry climate that was helping me, back to a cold wet one where I’m in way more pain and miserable. And I don’t have lupus; I have severe progressive fibromyalgia and rheumatoid arthritis, on top of a plethora of other issues. And trying to get back to the warm, dry climate has been like trying to plan the perfect crime. It’s practically impossible.” – Duchess A.
8. I Couldn’t Work
“I was fobbed with growing pains, mild anemia, pains are from your mental health, poor posture, not enough walking, too much walking and so much more. It led to me not getting diagnosed until I was nearly 30 even though it all started when I was 16. It led to many years of struggling with work, studies and more.” – Karla P.
“I was misdiagnosed and received the wrong treatment for 12 months! I could not work for almost four years because I was unable to move. I had to leave my position at my workplace of over 15 years. My children’s lives were impacted hugely in many different ways. Even now I have to explain my diagnosis because to the normal eye, I look fine.” – Joanne B.
9. It Caused Anxiety
“First I was told it was growing pains, then AS which I was given medication for, but my symptoms progressed beyond just my spine. Next, a Doctor was sure it was MS and wanted to begin treatment. My other doctor told me it definitely was not MS. Both went back and forth with one another which left me with no answers. Seven years later, I received a correct diagnosis after about every test possible. This affected me negatively because I developed anxiety by not knowing where these new and progressing symptoms were coming from all of those years with my gut telling me they couldn’t have all been caused by AS.” – Katherine L.
10. I Developed Trust Issues
“I’ve had symptoms of fibromyalgia since I was six years old, but not diagnosed until 11 years old. During those five years, several doctors said I was a hypochondriac and recommended I go get psychological care. My pain was either all in my head or I was doing it for attention. My mom was even accused of having Munchausen by proxy disorder. Although I was given a correct diagnosis, I still have major trust issues with doctors. I only have a handful of doctors and medical professionals I trust. However, if I have to go to a doctor I don’t know, like an urgent care, or ER, I am on my guard or I have someone else go with me if I’m incapable of making a decision. Someone who will protect my interest.” – Justina B.
“I trust no one. I rarely go to the doctor until I am very sick because I worry about negative comments or not being taken seriously.” – Jennifer S.
11. I Stopped Taking My Symptoms Seriously
“I was given a conversion disorder diagnosis in freshman year of high school. From there, everything I had happening was blamed on my anxiety, even if it was kind of out there. Stomach ache? Anxiety. Chills? Exhaustion? Anxiety. So when I developed new symptoms that are unusual for me, pre-EDS diagnosis, I was told by doctors and therapists that it was in my head. I still fight my brain to remind myself that new symptoms ARE something to get looked at.” – Saylor A.
12. Difficulty Recovering from Inaccurate Treatment
“[I was] treated incorrectly. No treatment and had to wait for the incorrect medicine to get out of my system before anything else could get started.” – Christine N.
13. I Blamed Myself
“I was told for over a decade that my POTS was just anxiety. So I spent the whole time from age 16 to 31 blaming myself for how awful I felt. ‘It’s all my fault; I just can’t handle life.’ Then I ran across an article on The Mighty and took it to my doctor. It took like three weeks to get diagnosed. I absolutely have anxiety, but it wasn’t anxiety making me feel like dung every day.” – Shayla F.
14. I Lived In Unnecessary Pain
“I was misdiagnosed with IBS when I had an enlarged uterus. 20 years of unnecessary pain.” – Nancy Y.
15. There Were Unintended Side Effects
“When I developed a cauliflower ear before being diagnosed with relapsing polychondritis, the doctor thought I had MRSA and treated me with a heavy-duty antibiotic. The antibiotic caused me to develop severe thrush and I didn’t open my mouth at all during my son’s wedding so it wouldn’t show.” – Debby R.
16. I Doubted Myself
“Delays in diagnosis and very dismissive doctors for both my endometriosis and IC were very frustrating. Not only did it delay me in getting any kind of relief from the chronic pain, it made me second guess and doubt myself. Patients need to be their own advocates because no one else knows their bodies like they do.” – Megan D.
17. It Affected My Self Confidence
“I was told it was just growing pains for years, then told it’s all in my head, then I’m just a hypochondriac! It really affected my self-confidence as nobody believed me. Even my family thought I was talking nonsense and every doctor thought the same. I suffered alone in silence for a long time, braving a new doctor once a year until finally, a doctor listened.” – Bethan J.
Being misdiagnosed isn’t easy and it can come with a lot of emotions. Just remember that you are not alone in how you feel. If you’re struggling, please reach out to someone you trust.
If you are struggling after a misdiagnosis or having a hard time coping with your diagnosis, check out these articles:
- 8 Things I Learned About Trauma After Being Diagnosed With a Chronic Illness
- When Chronic Pain Leads to Post-Traumatic Stress Disorder
- When Chronic Pain Leads to Post-Traumatic Stress Disorder