This Is What Trauma Looks Like to Me

Kat Rees avatar

by Kat Rees |

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When I hear the word “trauma,” I think about car accidents, fires, military deployments, and abuse. I think of movies with sad music and loud explosions, not the quiet hours at night trying to fall asleep despite the pain.

Trauma has affected my mental health in a major way, but it wasn’t due to a sudden catastrophic event. My trauma stems from years of being ignored by medical professionals, of feeling ashamed for not feeling well enough to participate in activities with friends and family, and of simply feeling ill all of the time.

My experience of being diagnosed with Cushing’s disease was short, as I quickly received a diagnosis once I actively started looking for an answer. But for many years before that, I suffered without looking for a reason for my weight gain, acne, headaches, depression, and anxiety. I thought it was normal to gain weight in college (to a certain degree, it is), to develop sudden and extreme acne, and to have anxiety about my grades. The thing that wasn’t normal was the severe magnitude and the fast acceleration of symptoms.

Kat, before and after surgery and treatment. (Courtesy of Kat Rees)

Whenever I went to the doctor for the more severe symptoms, such as the constant headaches, insomnia, shaking hands, and joint pain, I was always turned away with a diagnosis of anxiety and depression. While doctors weren’t wrong about that, they did use it as a scapegoat for what was really happening to me medically.

This prevented me from trusting doctors. I felt lost and alone in what I was going through. I had constant pain, fatigue, and anxiety, and I thought that maybe I was just weak.

It seemed that all of my friends were getting along just fine, so why was life so much harder for me? Eventually, even my friends grew tired of hearing my excuses and complaints. That made the depression even worse.

I received my Cushing’s diagnosis after seeing a neurologist about my shaking hands. The neurologist suggested an endocrinologist. Later, I had surgery to remove a tumored adrenal gland, and within a year, I returned to normal.

Because I had lived my entire life up to that point with no one believing me about my illness, and feeling constantly sick, I developed a severe form of illness phobia. To this day, I have extreme anxiety about germs and feeling sick and nauseous, and I need to tell my close family members if I feel ill. I’m afraid that if I don’t tell them, it’ll get worse.

I don’t know how to handle being sick or alone. It’s hard, because I also believe I’ve developed a lower tolerance to pain and anything uncomfortable, because I think about how I feel all of the time.

This has led to many emergency room visits due to anxiety, nausea, and fear about not knowing how to handle being sick and alone. Every time I go, it gets worse because technically, nothing is wrong with me anymore — I’m left only with fear.

Fear of the unknown, of being uncomfortable, and of others judging me has led to many years of therapy. To this day, friends and family members tell me they are tired of hearing about my ailments.

This fear is part of who I am, and I have learned to deal with it. I am nowhere close to being cured of my trauma, but every day, I grow closer to being comfortable with the scary thoughts.

I must remind myself that I’ve been through so much, and I’m still alive. I have learned that even if I am ill, uncomfortable, or in a bad social situation, I am sufficient to see myself through it.

Kat enjoying life. (Courtesy of Kat Rees)

Trauma doesn’t always include events that are over-the-top dangerous and catastrophic. It can be caused by something that has personally triggered pain and suffering for you. Disaster and emotional pain are highly individualized, so don’t let anyone tell you that your hardships aren’t relevant.

Once you accept your trauma, you can start on your road to recovery.

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Note: Cushing’s Disease 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 Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.

Comments

Craig avatar

Craig

Kat,
Thank you for the touching article. I enjoyed reading over it as I can personally relate to most of it being a Pit Cushie myself. I had gone through much of what you described above even after the surgery. I don't think that people, including the Doctors, are acting maliciously, but the results are crippling and I feel that creating awareness of the situation are the first steps to change, so thank you for sharing your experience openly.

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Kat Rees avatar

Kat Rees

Thank you Craig,
I'm sorry that you have gone through something similar. A lot of times, to doctors we are just another face. It's so important to be your own advocate. Going through this has made us strong!
Take care!

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Jason Tucker avatar

Jason Tucker

Such a great story,in the fact that i can relate to it,and u had the surgery to correct it.
In England we have a free health system,but is so hard to get referrals,as General Practictioners are just massively supported by antidepressants and the anxiety and depression diagnosis,and obsessed with Diabetes(only thingthey trainin Endocrinology ithink!).
Tho because i am just at stage of 2nd low dose Dexamethasone test(next week),even after low and high one a year ago-i not getting much joy!
And my Diabetes is getting worse(just want me on Insulin!). Even after MRI last year says maybe a slightly enlarged pituitary!
All was started from my paid for private tests-something i can't even manage anymore,like work.
Tho i have brain injury past(Post Concussion Syndrome),Autism assessment looming,i am now nearly 50,was about 39 when i started symptoms of what i think is Cycling Cushings.
Mostly affects my moods,and how i look with stomach like a pregnancy!

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Kat Rees avatar

Kat Rees

Hello Jason,
I am so sorry to hear you are going through this. Though universal healthcare is a great thing, I have heard that specialized care can take quite a while to get into. The symptoms are very discouraging, but it sounds like you're now on the path for a Cushing's diagnosis! You should give the other Cushing's columns a read, they may provide more enlightenment! Best of luck to you!

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Jason Tucker avatar

Jason Tucker

Thanx Kat,i hope so.x

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Beth Bacon avatar

Beth Bacon

Hi all, very similar. I think mine started from untreated Rocky Mountain Spotted Fever in my 20’s untreated. In my late 40’s I came down with Vitiligo systemic, Atrophic Autoimmune Gastritis, Gastroparesis, Hiatal Hernia, Lipidedema, possible Sjogrens, EDS, POTS, Schlera Lichen. So now the Lipidedema may be Cushings as a 1500 calorie diet with 2 hours of daily exercise does not touch the fat, and the last three months what looks like a Temporal Lobe Seizures with Phantom smells, no tumors seen, EEG results tomorrow. I have a lung nodule, and neuroendocrine tumor markers from relentless high Chromogranin A. So off to the lung doc. Vascular group to do work up for Carotid arteries and what feel like the beginning of Thrombosis. This all has been ongoing since 2008 when my hormones dropped. Now with stage 2 Kidney Disease the wanted me to go back to the Endo because of the years of fight or flight from the tuck born illness. Getting Cushing’s testing the next two weeks. I really hope to get this diagnosis after 16 years. Best of luck all of you. Any similarities with you folks for neuro stuff especially? Beth in Florida

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CAROLINA ZANON avatar

CAROLINA ZANON

Hello Katie, I am a Brazilian pit cushie, cured for 3 years now - ill for about other 9. Thank you for your text, I am trying to do the same in Portuguese to bring awareness to this terrible disease. Much love, Carol

Reply
Kat Rees avatar

Kat Rees

That's wonderful, Carol! Let me know if you need any help. Much love back!

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Angel Burton avatar

Angel Burton

Thank you for your story...I’m a Pit Cushie post op almost 10 years on the 1st of November. I started feeling ill last year again with symptoms and test are showing boarder line anyhow I just found out I have a tumor on my left adrenal gland so I’m thinking it’s from there now. We do need to continue to voice our story on such a rare or hard to diagnose disease.

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Kat Rees avatar

Kat Rees

Wow Angel, I'm sorry to hear it's coming back. It's strange to hear it might be coming back on the adrenal gland though, that is incredibly rare to get it in both places. I would love an update on how you're doing and feel free to reach out if you have concerns!

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Karie avatar

Karie

Kat,
I have just had an adrenal adenoma on my left adrenal confirmed. After three long years of begging for help. I understand every word you said. I hope you find healing for the trauma. Meditating may help. Have you tried Insight Timer? They have great ways to get you started. I’m so glad you were discovered. It’s so sad to me that my 3 hell years were short time compared to many. It is such an insidious disease. You feel and look like crap and people get tired of being sympathetic

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Kat Rees avatar

Kat Rees

Hi Karie,
Yes, it's difficult to cope for sure and I'm sorry it took 3 years for you, but I'm very excited for your next healing journey! I will definitely check that out because there's no such thing as too much self care! Thank you! Feel free to reach out when you need!

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Marie saintil avatar

Marie saintil

Past 2 years I been sick ER not help OB not help I don't even know what to do my husband everyday crush on me because my sickness 2 months ago I changed my OB thank you Jesus when I talk to her about my situation she send me for blood work 2 times my prolactin levels high at the time im bad with my vision my husband drive me to the hospital after everything the do MRI for result hmmmm pituitary tumor is big, I don't know what to do please can you help me, people's said surgery bad but when I was checking people who still take medication for many years the still have the same issues...
I'm happy to hear your testimony. God continue to bless you

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Kat Rees avatar

Kat Rees

Thankyou, I'm so sorry to hear of your hardships. It is a difficult situation for you, your family and friends as well. You need to see an endocrinologist or another one if they aren't helping. Surgery really helped in my case and might help you as well. I would look into all the options you have and consult with your endocrinologist! Take Care, Marie!

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Jason Nourse avatar

Jason Nourse

Kat,
I can identify with your experiences of watching others grow frustrated with your pain. I found it very discouraging and allowed it to coerce myself into questioning if I was actually experiencing these long standing bouts of pain throughout my body. It is tough to not have the support if those closest to you. I commend you for pushing through your situation and finding resolve in some of your ailments. Good luck to you and thank you for sharing.

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Kat Rees avatar

Kat Rees

Thankyou Jason! Best wishes to you!

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Kelly avatar

Kelly

Thank you for writing your story. I’ve been wondering about cushings for about 2 years now for my 9 year old. I am now pushing for answers and not stopping till we know for sure whether it is or isn’t. Very painful to watch someone go through constant symptoms to see her body change so fast with weight and her face look so swollen and full, very hard. I will look around here, I’m told it’s not an easy diagnosis, as far as a test saying yes or no. Is an MRI the best way to know what’s happening in the head??? Thank you again.

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Becky avatar

Becky

Thank you so much for this, Kat. My daughter’s symptoms started at 13 and we were dismissed by doctor after doctor. She also saw a neurologist for the tremors and I asked if it could be related to the weight gain, insulin resistance, heart palpitations, and lack of periods. I was told no and we were sent on our way. Of course more and more symptoms popped up. I asked every specialist if all these things were related and was told no. The moon face and stretch marks came around the same time and by then I knew it was Cushing’s and asked to have her cortisol checked. Her high urine test came back almost exactly two years after we noticed her sudden weight gain. Her brain surgery was less than two months later. She’s 8 months post op and just turned 16. Many things are better but she definitely has medical trauma because of it. She doesn’t want to talk about it much and I can’t get her to agree to therapy. I’m hoping that her mental health will eventually improve as much as her physical health.

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