The Damage Done from Being Told ‘It’s All in Your Head’

The Damage Done from Being Told ‘It’s All in Your Head’

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“It’s all in your head.”

I wish medical professionals knew just how damaging this comment is to someone with a chronic medical condition. These words can make those of us with chronic illness question our judgment of symptoms. It leaves us feeling angry and forces us to think, “Am I going crazy?”

Medical professionals who can’t find an explanation for symptoms often resort to a diagnosis of exclusion. According to the National Library of Medicine, a diagnosis of exclusion is “the diagnosis that remains after all other differential possibilities have been excluded.” Often in the chronic illness community, it becomes a diagnosis of a mental illness. It is important for medical professionals to know that telling a patient who is suffering that “this is all in your head” or “this is just anxiety” can have a lasting, sometimes detrimental, impact on a patient’s physical and mental state.

I was dismissed as having “just anxiety” for years before an accurate diagnosis and before receiving oxygen therapy. I can remember going into an emergency room after losing consciousness with an excruciating headache, confusion, and an overall feeling of extreme fatigue. When the blood work came back normal and the chest X-ray came back fine, I was labeled anxious. My history of a mental illness masked my lengthy medical history, which includes more than a dozen major surgeries.

Those of us with pulmonary hypertension shouldn’t have to look sick to get proper care. We shouldn’t be dismissed just because our illness isn’t as black and white as one would hope. When medical professionals don’t see anything acute on scans or blood work to explain symptoms, they will often tell us “it’s all in your head” or “it’s just anxiety.” The difficult thing about chronic illness, especially pulmonary hypertension, is that more often than not, it won’t show up on an X-ray or blood work.

When going into an emergency room before my diagnosis and before doctors realized how low my saturations were upon exertion, I was given Ativan (lorazepam) and referred to a psychiatrist for cognitive behavior therapy. I began ignoring my symptoms when they would arise. “It’s all in your head,” I would repeat to myself as I saw myself looking back, pale in the mirror. I’d think, “It’s all in your head,” when I would walk into my classroom and begin to see black spots in front of me. Thinking “it’s all in your head” stopped me from getting proper medical care. Going to the hospital was the last thing I wanted to do, just to hear “it’s all in your head.”

Before labeling a patient as mentally ill, it’s important for doctors to know that we know our bodies and know when something isn’t right. Just because we may have a history of mental illness doesn’t mean that our symptoms are a direct result of it. If it weren’t for medical proof with a heart catheter and seeing how low my oxygen levels were, I may still be thinking “this is all in your head.”

Doctors need to be sure that a diagnosis of exclusion is just that, an exclusion. Other possibilities need to be ruled out. Do I struggle with mental illness? Yes, I do. Is my mental illness causing my symptoms? Now I know that it isn’t. It took years of self-advocacy to receive a proper diagnosis. My heart breaks for those who have had similar experiences. It breaks for the ones who are still struggling, wondering, is it just anxiety?

Medical professionals need to be aware of the negative impact they can have on someone who is struggling before they say “this is all in your head.” It’s time they stop using acute illness markers to judge the validity of our symptoms. Our symptoms are real and leave us feeling as if our bodies are not our own. It’s important for us, as a chronic illness community, to advocate for ourselves and each other. Speak up if you feel as though you are being dismissed. Your physical health and mental health matter. Together, our voices can be heard.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

6 comments

  1. Joanne says:

    Amen Brittany! Many PHers in my support group (most especially, the female members) were told the problem was psychological, as they searched for an answer. I remember one lady relating how the ER doctor came in after she’d been resting quietly on the exam table and told her her levels were normal & nothing was wrong with her. She had to make him stay and say, “watch this!” and started walking around the room, so she could show him how low her O2 would go and how SOB she’d get on exertion. That finally penetrated his brain and ultimately led to her diagnosis of PH. I encourage our group members who’ve had this experience to write to these doctors and inform them of their diagnosis. Education is the key. Great job!

    • Brittany Foster says:

      Thank you so much for reading and giving such a supportive response. I agree that awareness is key and I too have written responses to ER doctors in particular about the seriousness of dismissing those of us with chronic and rare conditions. Although our illness is invisible we should never be treated as if we are! Keep encouraging others in the group to do the same and maybe share this post with others in the group so they know they are not alone ! Xoxo

  2. Andrea Rice says:

    I was told what I am describing doesn’t exist, no information to confirm what I was feeling was known to any human when this occurred as a young adult. This was when there were more male doctors than female so I felt hugely misunderstood. Never understood how a male doctor could understand how I was feeling inside my female body even though he knew the human body he couldn’t identify with the feelings I had. First I was labeled the moody girl no one wanted to be around and this was when I was a young child. My family took me to see doctors but my moodiness was never discussed. Found out something could be wrong when the hospital had me see my first psychiatrist at age 16 when in for Scolosis surgery that I enjoyed talking to but once my dad found out he got rid of her. Thanks dad. Wasn’t until many, many years later at the age of 30 that I found out I’m Bipolar, growing up in an abusive family the chances of me getting the help I needed was slim to none and so I grew up believing I caused the moodiness instead of a condition that without treatment and medicine chances of me succeeding successfully in life was slim. The family doctor the whole family saw was a man could have connected the dots but didn’t for reasons I don’t know.

    Once I was away from the family and spent as little time as much as I could with them, I learned as much as I could about being Bipolar and realized it’s the number one illness to be diagnosed to a person from an abusive family. I knew my parents were odd growing up but it never occurred to me I was abused not mentally and emotionally abused. Was shocked for many years with continued reading this time all about abuse.

    Then I moved from up north to the southeastern United states and was told after having over and over again the same bronchitus, pneumonia that I was allergic to everything that grows where I live. So, I started on the allergy shots, and the allergy medicine prescribed by an allergist. I wasn’t at all happy because I spent most of my years inside having asthma only venturing outside when the pollen count was low which is rare where I live. It wasn’t until almost 20 years of living that chest pains brought me to the emergency room that I learned I had Pulmonary Hypertension and that this chronic illness without a cure is very similar to allergies and is often miss-diagnosed. Saw my first cardiologist, started on medicine and was released a week later with advice to lose weight and eat healthier. I lost weight, still ate the same unhealthy foods integrating healthier choices and then almost a whole year later ended back up in the hospital again with Severe Pulmonary Hypertension advanced stages of the disease now with a two-year time limit left to live.

    How could this illness get so bad so quick, was the subject of many on the medical team trying to slow down the progress of this disease so I can live past the date of death approaching fast. Currently I have never felt better in my life. Don’t have shortness of breath and can only walk 3 feet stop, repeat the process anymore. Using oxygen but don’t feel the need to use it to much anymore. No watery eyes, no runny nose, no asthma most of all and all those inhalers not one has to be used now. Taking Viagra and thought I could be having a great sex life but it’s a different side of the medicine that is working so well with my enlarged heart 3x’s the size and the possibility of having a transplant for new lungs is slim because my body is responding well to medicine. Could be I see a woman cardiologist, director of cardiology at the hospital I see her at. When I first met her she said she doesn’t care if I have money or not, she’s gonna help me and so she has and currently is. I don’t feel misunderstood by her. I feel she understands how I feel when I have an appointment.

    Was 54 years old when first diagnosed and saw a man cardiologist at the beginning and he saved my life initially and started me on the medicine at the beginning and then I was transferred to this woman cardiologist doctor. I’ve had my life saved twice by two awesome cardiologists because I’m still physically here.

    I could blame the other male doctors from my youth that I saw but the medical field is always changing always evolving and it’s quite possible that what wasn’t known in my past is well known today. The medicine I took for Bipolar was Lithium and it’s an old drug but I didn’t care because it worked. The newer drugs didn’t work and made me meaner including Depacote. So far, I’m not around doctors that think what I tell them doesn’t exist anymore I have seen doctors look up things in their medical dictionary at appointments so this tells me maybe enough people complained like me and this was addressed to them not to say this disrespectful saying to patients. It is up to them to figure out what is going on with us. We do our best to describe pain and feelings that need to be taken seriously when it comes to our bodies and our lives. Going to see the doctor isn’t for fun, it’s serious business that needs respect on both sides the medical side and the patients side.

    One complaint I do have is no one suggested seeing a nutritionist and I find this incredibly odd. I asked my doctor about it and she said sometimes they forget but it still doesn’t make sense to me. I ate unhealthy all my life and no one should ever assume I or anyone else knows what healthy eating is. My doctor wants me to eat protein enriched foods so I know some of them but not all. She’s vegan and eating naturally is the way to go. Read a lot about this way of eating. No additives, no colors, no sugars, from the earth. Have asked so many times for a referral but didn’t realize has to come from a different doctor my family doctor but the waiting game is getting old. I want to know all about food now, and not just eating it but how food interacts with the body to make everything function the right way.

    I didn’t have a good start in life growing up with parents that put their selfish needs ahead of mine and so I suffered eating foods that weren’t good for me, nor did I have doctors that understood what was going on inside my body and how I felt. But this will never repeat itself again. It’s in the past and hopefully will stay there. I have a great medical team of professionals trying to help me live past two years and I am doing everything within my power to work with them and do whatever they need me to do. I need help and so hopefully the nutritionist will call soon so I can find other options instead of being bored eating the same foods.

    Anyone that has opinions positive or negative, please feel free to send them my way as long as they are given in a constructive way. I love learning new things especially from others that have this chronic illness without a cure because I know no one that has it except me where I currently live.

  3. Brenda Fontenot says:

    I’m going on Remodulin IV this week, hoping to get the transplant when comes available hoping it’s soon. Did you know anything about this because the pump is so big. I have been very upset with this but Iknow something has to be done.Any comments on the transplant procedure?

    • Julie says:

      I have been on remodulin IV for seven years. It saved my life. You will adjust. Find a comfortable fanny pack and good time of day to change out the medicine cassettes. I do my at night before I go to bed as the house is quiet and there are no interruptions. All the best to you.

  4. Miriam B says:

    Hi Brittany,

    Thank you for writing this! This is my exact experience! I had had many, several, experiences with medical professionals, ER doctors, ER nurses, paramedics, family doctors, psychologists, and no one, once ever thought to investigate my symptoms further, and I was always dismissed and told everything was in my head, pretty much for 23 years until I was collapsing, exhausted, desaturating, having constant migrains, and in stage 3 heart failure. I went to an ER about my heart suspicions about 2 weeks before I was diagnosed with severe PAH, right heart failure, and a large ASD. I can’t even begin to think how different or how much better my life would have been if my ASD was acknowledged and found all those years (had it since birth), I wouldn’t be that kid who faints all the time, who can’t keep up in sports (and was told they were constantly lazy, out of shape, and penalized for a unknown medication condition), who had brain fog, and “severe anxiety”, yeah, desaturating usually makes you a little shaky since your brain can’t get oxygen! There are 13 years of doctors telling my parents nothing was wrong and it was all in their heads, before my own experience of over 10 years of people telling me nothing was wrong, and it was all in my head.

    It’s almost unbelievable, and thinking about how I was always dismissed and disregarded as having a legitimate medical problem, made me feel like I must just be doing something wrong, that I must just be all the things they say, and like disgarded trash of society.

    Society failed me. Failed us.

    That’s how I see it. And now we pay for it.

    Although, I am forever grateful to the physicians who finally did listen to me, they probably saved my immediate life, and gave me some more years.

    But it is almost incomprehensible how we fall through the cracks, and it /seems/ to be a lot of girls and women that are being ignored by the healthcare world in this way, and still just labeled “lazy” “anxious” “neurotic” “wanting attention”. It’s disgusting.

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