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    Being Diagnosed Late With Atypical Cystic Fibrosis and Having Trust Issues

    I have trust issues. And amazingly, they don’t stem from one too many “trust falls” gone wrong from my younger years (though maybe that contributed). My trust issues center around bigger things: trusting my body, trusting my doctors, and trusting… life. I was diagnosed with atypical cystic fibrosis (CF) one month and eight days before I turned 20. I had been complaining to doctors for as long as I can remember about having trouble breathing, being tired all the time, getting sick if I ate “normal” kid food, and of course, my bi-monthly “asthma attacks” that left me unable to talk, breathe, or swallow for up to a week. “It’s asthma,” my pediatrician would say. “She’ll grow out of it.” When my chronic digestive symptoms worsened around age 13, I was told to drink prune juice. When that didn’t work, it was medication. Nothing worked. My diet became more and more restricted to the five things I knew wouldn’t make me sick: lettuce, cucumbers, frozen strawberries, bananas, and protein powder. I got sicker and sicker, and it was clear that I wasn’t healthy. I started figure skating when I was 8 years old and quickly knew I had found my heart’s passion. I fell in love with it and trained to the best of my body’s ability — withholding from my coaches the pain it caused. I felt like figure skating seemed to wear me out and be a lot harder for me than for my training partners. Skating isn’t a sport that welcomes showing “weakness,” and since I was being told by all of my doctors I was “fine,” why would I say anything? After graduating high school, I moved and started training at an Olympic training center with renowned coaches from all over the world. I was living my dream—but trying to ignore the so-obvious fact that my body was breaking down. Just from my appearance, it was hard for anyone to ignore it — including my coaches. After only five months of professional training, I had a serious fall that took me off the ice and also led to my getting diagnosed with osteoporosis at only 18 years of age. I was terrified and heartbroken — being told I needed to stop skating because it was too risky for my bones was hard. I was no longer able to train or skate at all, so I moved home feeling utterly defeated. I knew something wasn’t right — everyone did — but I didn’t have any faith that doctors would finally be able to tell me what was wrong instead of just dismissing me as usual. Ironically, my saving grace came in the form of a lung infection — pseudomonas aeruginosa, to be exact. I woke up unable to speak or swallow, thinking my training-too-hard days were finally catching up with me — only to find out that my lungs were swimming with super-rare, hard-to-harbor bacteria. The urgent care doctor casually dealt me some medication and assured me I would be better in 10 days. Being the investigator — and skeptic — I am, I wasn’t convinced (or reassured), so I consulted “Dr. Google” to find out how in the world I came down with this rare infection. I learned that there are basically three conditions that can make you contract this bacteria — acquired immunodeficiency syndrome (AIDS), cancer or cancer treatment, or cystic fibrosis. I knew I didn’t have AIDS and I had not had chemotherapy or radiation, so all that remained was cystic fibrosis. “There’s no way I have that,” I said to my mom. “That’s that ‘baby disease!’ They would’ve caught that.” I pulled up an article about CF, reading through the symptoms just in case. As I did, my heart sank and tears flooded my face as I realized that everything made sense. All the puzzle pieces fit together. How in the world had the doctors missed this? I returned to my pediatrician — now no longer content to accept her prune juice and prescriptions. “I want you to test me for cystic fibrosis. I think I have it,” I insisted. She ceased her note-taking and looked up at me blankly. “I think you might be right,” she replied. I was referred to my nearest cystic fibrosis center for evaluation and testing. By the time of my appointment, I had struggled to eat and was so weak I could hardly walk. When the doctor at the cystic fibrosis clinic walked into my room, she took one look at me and immediately sent me down to the emergency room to be admitted. I had a complete abdominal obstruction, pancreatitis, four different lung infections, liver disease, and kidney disease. A few days later, I was also diagnosed with cystic fibrosis. A little less than a year after that, I got my genetic test results and was told it’s not “typical” CF, but a rare variant of it instead — one that doctors and researchers know absolutely nothing about. All they knew from clinical observations is that those of us with this form of CF fare no better than others with CF… and sometimes we’re even more affected. My initial shock-turned-sort-of-relief after actually having a diagnosis was smashed once I was told, “We don’t know how to help you.” The fact that my condition was getting more severe every month didn’t help. I started having one obstruction every week. I upgraded to GoLytely as my drink of choice — until even that stopped working. I did everything I knew to do, and my efforts did help — but only to keep things at bay. Eventually, the things I tried weren’t even readily doing that. In 2019, I had surgery for an ileostomy, which improved my quality of life and health tremendously… but not before I experienced literally every complication you can possibly have with an ostomy. One complication still lingers — prolapse — a common symptom in both CF patients and those with Ehlers Danlos syndrome (EDS), which I was also diagnosed with in 2020. Living with both cystic fibrosis and Ehlers Danlos syndrome is hard for me. The two diseases so often conflict with one another (Imagine a chronic cough with a hole in your abdomen and weak connective tissue!), and I honestly struggle to deal with them both. Most days, I feel terrified of when the other shoe will drop. I know I have more surgeries ahead — some of which will be harder than the ones I’ve already had. It’s another terrifying thought. So how can you trust that everything will be OK when nothing has been OK in a long time? I honestly don’t know. And after a long time of trying to figure it out, I’m not trying anymore. Trust is a brutal battle — just like an organ shutting down or an insurance pre-authorization. Sometimes trying to find the answer to unanswerable questions — like how to trust with a disease — isn’t necessarily the answer we maybe should be trying to find. Sometimes the only way to figure out how to keep going is to step back and realize we have been going — day after day, month after month, year after year. And even when it’s our bodies that so often betray us, we may need to step back and acknowledge that our bodies have enabled us to keep going. Sick or not, CF or not, EDS or not, it keeps surviving. And that body? The one that’s been through what it’s been through and still keeps on? That’s something we can trust.

    Community Voices

    Just curious, have you ever been misdiagnosed?

    If so, how did that label effect how you were treated by medical professionals?

    Did it have any long term consequences such as difficulty obtaining disability?

    Considering writing a short story on the negative impacts of being misdiagnosed. My experience led to years of delayed necessary treatments, medical gaslighting, and Inability to obtain disability.

    6 people are talking about this
    Community Voices

    Assumptions and mistakes in reviews and assessments

    Every time I have a diagnostic assessment or a review they type up a summary of what was talked about, how my mood seemed, what I was wearing all objective versus subjective opinions. i.e. Mood: subjectively depressed, objective mood a bit anxious and low. What I never understand is why it's always the objective (psychiatrist's) view which is taken as how I am when they have just spent 1 hour with me out of the days/weeks and months I've spent LIVING the mood and that I've been there before many times and know that mood too well.
    Small errors in reviews over years totally create a picture of what could be an entirely different person...I told one doctor that I'd managed to get a job but had been sacked within weeks for being unreliable (a common problem with lots of physical AND mental health issues). The summary said " C said she had recently been offered a job but had turned it down"
    Every subsequent review or assessment is based upon the "experts" previous summary and even the last example about the job shows how these mistakes can alter the perception of someone. Losing a job because your health let you down AGAIN and leaves you feeling hopeless that you'll never be able. Being offered a job (especially as it was in a sector I loved) and turning it down isn't even trying and on paper or makes it seem that there's no point in psychiatric help as I'm not helping myself.
    I'm still struggling for a diagnosis 6 or 7 years after first referral to the mental health team because of all these conflicting and incorrect reports.
    All I really want is for them to stop batting 2 diagnoses back and forth and concentrate on the symptoms because over time left untreated these symptoms are becoming/ have become much more severe.
    I don't know how it works in the US (I know there's lots of people from the US on this site) but here in the UK it's hard to even get to see a shrink and if you do you don't get to choose who or someone who specialises in your particular needs. You certainly don't get to challenge them or call them on mistakes made in what is your official mental health history and what medications are prescribed from and diagnoses formed.
    If I visited a podiatrist (foot specialist) and they diagnosed laryngitis it'd be about the same in physical health
    Does anyone else feel this helpless and misunderstood? In a previous post someone mentioned having to become your own doctor.. it's so true I have had to study almost enough to ACTUALLY be a shrink 🤔 I wish everyone a speedy arrival at a correct diagnosis from someone who listens and then the best treatment for YOU and your symptoms ❤️ #Misdiagnosis #reviews #incorrectasessment #symptoms

    Community Voices

    Has anyone else out there gone through the being misdiagnosed with bipolar as a teenager?

    I’ve read this was a big issue in the late 90s through the mid 2000s. Possibly still is but that it exploded at that time—childhood diagnoses of bipolar disorder. Am I the only one who has gone through this? I’m curious about others stories. Did this happen to others? What was their experience like? Did it impact their relationship with their families? Do they feel it still impacts their life today? #EarlyOnsetBipolarDisorder #Misdiagnosis #MedicalTrauma

    Community Voices

    Wellness Wednesday: Diabetes Misdiagnosis

    <p>Wellness Wednesday: <a href="https://themighty.com/topic/diabetes/?label=Diabetes" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7700553f33fe99129c" data-name="Diabetes" title="Diabetes" target="_blank">Diabetes</a> Misdiagnosis</p>
    Community Voices

    I am so confused with misdiagnosis

    I have struggled with mental illness since I was about 14… and I’ve had so many diagnoses since then, that I don’t even know who I am anymore. The last psychiatrist said I have Bipolar Disorder, General and Social Anxiety, AND PTSD. My most recent therapist disagreed and said I have BPD and I agree with the therapist, but still feel so lost. I’m 23 and I’m lost.. #Misdiagnosis #BipolarDisorder #BorderlinePersonalityDisorder

    5 people are talking about this
    Community Voices

    I want to get a second opinion but I'm scared of medical gaslighting..

    I'm questioning my fibromyalgia diagnosis. I know this usually work the other way, but the only test my GP did before diagnosing fibro was an ANA test (negative).
    I'm concerned that there is something going on that needs a different treatment and that this approach can be causing damage.
    I want to see a specialist but I have no idea who I fall under.

    I have been shut down by doctors more times than I can count. I find that many get irritated when I know more about my condition than they do. I'm not great at pushing for things and advocating for myself when I dont feel like the physician is listening to me.

    Does anyone have any tips?

    #Fibromyalgia #Misdiagnosis #Gaslighting

    1 person is talking about this
    Community Voices
    Community Voices

    Hello! My name is Cassia, I'm a 36 year old mother of 5 and discovered The Mighty when researching different aspects of my new diagnosis....I have Bipolar 1 and as a added bonus substance abuse issues most my life. I was previously told I have depression, anxiety, and PTSD due to previous domestic violence, and was prescribed every medication known to man for those disorders. None worked. I self medicated, and was able to hide it from my husband for years. Then it all blew up in my face, he discovered my drug issues, so I flipped to on & off drug issues and online gambling. My husband does not believe in addiction, he dont believe I really have any mental illness, nor does his family who is the only family I have left. My mom is a alcoholic, dad is also bipolar, I have no contact with either. My husband believes I chose to use drugs, I chose them over my family because I don't care. I chose to spend money stupidly, I chose to be depressed, go threw mania, self hate, isolate, say irrational things, have no energy, cry often, be paranoid, over react, over think, plus everything else that we bipolar go through. That I use my diagnosis to get another pill. Since no one understands, I've alienated everyone but my husband (and I do mean EVERYONE). I was literally uninvited to every family event/holiday. I'm scared I'm going to lose my husband, and our 5 kids with him. I'm looking for help. Help for myself, help for my husband to understand and believe, and to get my life back. I now have a councilor, phyciatriat, and am impatiently waiting for a intake worker to call me back for substance abuse treatment. I need support. I need a friend that understands.

    5 people are talking about this
    Community Voices