Being Told Your Symptoms Are ‘All in Your Head’ Has an Emotional Toll
Receiving a diagnosis for a rare disease takes an average of 4.8 years, according to one study. That means almost five years of daily struggles with an unknown cause. It means being doubted by doctors and subjected to countless tests, and having constant feelings of insecurity. Without answers, it’s easy to believe that perhaps you are making it all up.
When I first started having symptoms of myasthenia gravis in 2004, I had no idea what was happening to my body. I felt as if my cheeks were numb, and trying to smile was difficult. I started to slur my words, and swallowing food became nearly impossible. By the time I finally received my diagnosis, I was surviving on a quarter of a jar of baby food a day and was mopping up my saliva because it was difficult to swallow.
My mum brought me to the doctor, and after a thorough checkup, he proclaimed that I had globus hystericus. He concluded that the “lump in my throat” was in my mind. He thought I was looking for attention and wasn’t really sick.
As we walked out of the clinic, I could see the disappointment in my mum’s eyes. She made an appointment with a psychologist later that afternoon, and I battled through many sessions with him as I tried to make him believe that I wasn’t making up my symptoms.
I heard my mum crying on the phone to family members about my diagnosis. She didn’t understand why it was happening. She wondered if I felt that I wasn’t getting enough love or was desperate for attention. I was an awkward teenager at an all-girls school, so looking back, I can understand my family’s stress and concern.
After a few weeks, the psychologist called my mum and told her that he believed me and thought there was something more sinister and dangerous going on. He advised us to return to the doctor, who still thought my symptoms were psychosomatic — that they were caused by a mental factor such as internal conflict or stress.
This time, however, the doctor listened to us and called a local neurologist. She was fully booked for the next few months, but when he explained the severity of my condition and that my weight had dropped to 80 pounds, she fit us in for an early morning appointment.
The neurologist diagnosed me within 15 minutes, telling us that if we had left it much longer I could have died. Inside I was breaking as I was told what my new life would be, but I also felt a massive sense of relief that I finally had a name for what was going on in my body.
Years later, the trauma of being doubted by doctors and my family still affects me. I have huge self-doubt and often don’t trust my own thoughts. Seeing a life coach has helped to release the pain that I had been carrying around, but it has taken over 16 years of fighting through it to recognize the cause of my self-doubt and emotional pain.
In honor of Rare Disease Day on Feb. 29, I want to reach out to healthcare professionals to ask them to be more aware of the effects their words have on patients and the emotional pain they can cause. I’d like to ask them to be kind and to listen to their patients rather than assuming that their symptoms are made up or a cry for attention.
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Diana Studer
Did you ever get an apology from the GP for not referring you to a neurologist before the disease was so advanced?
Megan Hunter
Sadly not. I went back to see him for a simple cold & he acted like he had done nothing wrong - he may have been embarrassed though.
Susan Benedik
I live in Portugal and was so furtunate in being diagnosed quickly. Hearing of other peoples' experience I realise more and more just how fortunate I was. My symptoms started very suddenly with Double Vision 5 years ago and then I couldn't chew. As I had had breast cancer my Doctor thought that it had recurred and had moved to my brain. When scans proved negative I was referred to an ophthalmologist and to a Neurologist. The latter was on the ball from the start and sent me immediately for an electrical test which confirmed the problem between my nerve signals and my muscles and I was given the diagnosis immediately. I was prescribed medication and was fine until recently when I started to get symptoms again and was admitted to hospital urgently for treatment. Thankfully I am now back to "normal" Throughout, I have experienced an understanding of MG amongst the doctors and nurses in the Algarve where I live. I have had surgery since diagnosis and the Doctors were fully aware about the need for care regarding anaesthetics and took every necessary precaution. And the same is the case in the Neurology Dept where I am now. All the nursing and medical staff understand and accept MG as a physical illness. I feel so safe and fortunate. Thank you for allowing me to comment.
Chris Jay
Megan, you have to develop thicker skin. That, or you should GTFO the internet. You place much too much value and pay too much attention to what strangers think of you, or say of you.
Stop it. It might be bad, but responding the way you do to people hating on you is really not attractive in any way.
Megan Hunter
I appreciate your message. I am an emotional person, but I feel this has made me a better person & able to offer support & kindness to others. I am not trying to "be attractive" to anyone, but simply showing the reality of living with a rare condition.
Mike
After three years of testing, retesting, five hospitals (including Mayo) and more doctors than I can possibly recall, I was dismissed by a leading Chicago neurologist with a recommendation for cognitive behavioral therapy. It would take two more years until a new neurologist at the sixth hospital identified me as Seronegative and put me on an effective treatment program.
I eventually reached back out to the neurology department Chicago hospital that had dismissed me and advised them of the outcome. My intention was informational only and was well received by the department head who replied directly.
If my story saves one person five years of waiting, wondering, worrying, then it was worth telling to the people who needed to hear it the most ...those who had listened without actually hearing.
Megan Hunter
I am so thrilled to hear that you managed to get an effective treatment program! We need to all work together for more awareness & to ensure that doctors take the time to listen & believe their patients.
susan k roberts
MG diagnosed Mayo Clinic, Rochester, MN. Wonderful physicians.
Joseph Phillips
"Inside I was breaking as I was told what my new life would be, but I also felt a massive sense of relief that I finally had a name for what was going on in my body." Ain't it the truth -- both halves of that statement! It's tremendously anxiety-producing to confront the new realities I will face every day going forward -- and I appreciate your insights in your columns as they help me prepare. But it is also a tremendous relief to name the beast. I spent over a year seeing doctors about my symptoms when they were just starting -- the slurring, an emergency room visit when I thought I was choking on some grilled chicken -- and finding out: was it a narrowing esophagus? was it an allergic reaction? was it a tumor in my brain? No, no, no... I had not yet heard that it was all in my head, but was getting that look from doctors that spoke that thought loudly. And I was triaging myself by dismissing other little things I'd noted like double vision ("I'm just tired"). To finally have a hospitalist in the emergency room -- who happened to be a 4th-year neuro resident moonlighting there on a holiday weekend -- put it all together and call it myasthenia gravis, to the bafflement of the admitting physician, was a huge relief, and got me on the path to treatment. And it HAS caused me to take what doctors say with a huge grain of salt, which creates its own anxiety and trust issues....
Megan Hunter
I am sorry to hear you have had such a tough time with healthcare professionals, but thank you so much for taking the time to read my blog. I hope your health continues to improve on a daily basis!
Wendy3
I was hospitalized 6 times for stroke throughout a 7 year period. I would slur speech, have facial dropping and at times lose vision or have my eye completely paralyze for weeks. On the seven trip to the ER I refused to be admitted. A young doctor told ask if they ever mentioned MG? I said no, but they did say they could not rule out MS. I was also told all of my symptoms were PTSD and I should take up Yoga. In any event, I went to a different town and got a diagnosis the same night. I tested negative in bloodwork, but positive on all remaining tests including EMG. At the time of diagnosis my neurologist had me on magnesium and Botox for migraines. Probably making me flare. Remember to be your own advocate everyone xx
Megan
Hi Megan,
I'm so sorry this happened to you. I have also had that traumatic experience of having a doctor totally discredit and invalidate my symptoms, and I still tear up thinking about it almost two years later. I want to use my experience for positive change, and as a second year medical student I am trying to implement something into the medical curriculum to highlight the negative impact a physician can have on a patient just by using words like "its all in your head" or "you need a psychiatrist" etc.
I was wondering if you had done any more work on the topic, you said you were trying to reach out to healthcare professionals on rare disease day. If you have any links to resources etc relevant to the topic I would love more information. Or, I would love to share your story or perhaps quote you with your permission. Your story really spoke to me is essentially what I'm saying and people like you are exactly who I need! Feel free to email me if you'd like to chat further.
Thanks so much!