A Letter to My Newly Diagnosed Self
Thinking back over the last few years following my recovery from Cushing’s disease, I still deal with some painful thoughts. To help process those thoughts, I wrote a letter to the person I was before my recovery, from the perspective of the person I currently am. In it, I reflect on my life since recovery.
Please note, trigger warnings in the following letter include anxiety, depression, body dysmorphia, and self-harm.
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Dear Kat,
Congratulations on your diagnosis! I know it’s been a long time coming, but now you know what is happening and how to move forward.
I know you’ve been scared, but I’m extremely proud of how hard you’ve kept working on your undergraduate degree, planning your wedding, and continuing karate classes even though it seemed fruitless to do so. It shows a lot about your character, and you’ll need that in coming years.
Don’t be afraid of surgery, it actually will be the easiest part of recovery.
Although you’ve lost some friends along the way, please know it wasn’t your fault. Some people don’t know how to handle hardships, and they’ll decide to just leave. It’s not your job to make them to understand or to apologize for being sick.
You must do what you need to do to feel better and to heal. Those who left aren’t the people meant to stay in your life. Better people will come into your life soon and appreciate you for who you are.
I know your wedding is coming up, and you’re a little worried about your weight. You’ll lose some weight by the time July comes around, but it won’t be all gone. Honestly, Kat, you look so beautiful and happy with all of your family and friends gathered to celebrate you and Logan.
You are so lucky to have such an amazing man sticking by your side throughout this illness. There will be more tough times ahead, and guess what? He’s still here loving you with all his heart. Please don’t forget you’re so loved, kind, and beautiful in all your uniqueness!
You’re going to have a bout of anxiety and depression, and won’t be easy. For a couple years, things will be so distressing that you won’t want to live anymore. We’ll make it through, OK? Do you hear me? We’ll make it through. Please remember my words.
Treatment will be the hardest thing you’ll ever have to do, but we have an amazing support system in our close friends and in Logan. You are not alone.
Please focus on a healthy relationship with food. I know you have a panic attack every time you eat, but try not to fear it. Instead, cherish food for how it supports your body and helps it to function.
Also, every time you panic, it isn’t the end of the world, so stop calling 911, and focus on breathing! You have so many ambulance bills by now, so you really need to believe in yourself and believe that you’ll survive. And please stop hurting yourself.
Finally, you need to help others who are in your situation now. People are going to ask for help and advice, and you have to help. I know you’re already passionate about helping others, and this isn’t a difficult task to ask of you. But I really believe that because of Cushing’s, we can help others even more.
It’s a scary time, but you’ll get through it. Comfort others with the knowledge that they can get through it, too.
Last, but not least, I love you, and I’m so happy with where we are in life right now.
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Thank you for sharing this vulnerable experience with me, reader. Please know there are people who can help and who care.
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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
A
Thank you ... words fail with this, but it can help so many of us, so just thank you
Kat Rees
I'm so glad, I appreciate you taking the time to read! Take care!
Jane Trethewey
I have the classic Cushings Syndrome shape. Have had it for two years after having had years of cortisol shots for my back over the years, finally the cortisol filled me up and in a week I went from 148 to 172. I am 79, I have never been heavy. My seventies had me less active due to back and no more cortisol shots"
No one has seen my body shape, we’re I COVID here, but tomorrow I am going to insist I be seen. I have been depressed, isolating, gone to size 20 from 14w.....and sometimes desperate.
Kat Rees
I'm so sorry to hear this Jane. Have you seen an endocrinologist yet or are they seeing less patients because of covid? Did you end up going the other day?Please reach out when you need!
Jess
Thanks so much for sharing.
It feels very lonely dealing with Cushings and reading this gave me a feeling of knowing I'm not exaggerating my struggle.
Kat Rees
It is lonely, but finding others going through a similar situation definitely helps!
Sarah Hussian
Thank you so much for sharing about your journey. I feel proud of myself for pursuing a diagnosis for 7 years and am so thankful for my docs and family!!
Take care and be kind to yourself!!
Sarah
Kat Rees
You should be proud for having that kind of perseverance! Not a lot of people are that determined to take care of themselves. I hope you are doing well!
Veronica
Thank you Kat for sharing your note to self. Yes, surgery is the easiest part compared to the recovery and the unknown of when it will all finally end. The withdrawal is a constant rollercoaster of emotional and physical pains which only one experiencing this can understand and you feel very alone. You have inspired me to help others with this rare disease and I also thank you for that. Note to You: You go girl and you look amazing!!!
Kat Rees
Thank you Veronica! I am so glad I could help in some way!
Suhail
My prayers and blessings with everyone diagnosed with this disease
sherry schneider
Well said ! Congratulations on getting to the other side, much love fellow cushie
Kat Rees
Thank you friend!!
Reilly I
Hi Kat! I was just diagnosed with Cushing’s a few days ago and I really don’t know what to expect moving forward. Do you have any tips that you wish you knew when you started?
Kat Rees
Hi Reilly! What I really wish I knew was that I had to give myself time and kindness to recover. I was expecting to lose weight very fast after my surgery, but it took almost a year. Eat healthy, hydrate, and let your body heal is my best advice!