How do you advocate for yourself?
I'd like to share with you one of the worst times of my life. I was a new mama with a six-month-old son. However, during my pregnancy and worse after delivery, I had burning pain alongside my stoma.
Doctors and specialists dismissed the pain
After safely (surprisingly) delivering my son, the pain became so extreme that I could barely walk or talk. I'd lose my breath from just talking. I went to numerous doctors and specialists and was dismissed as it being merely a hernia. I knew it wasn't.
Before this experience, I was the type of person to be completely honest about my disease and ostomy. I'd explain with a little bit of insecurity and modesty. I'd even refused to take certain medications because of the side effects. That's as far as I'd advocate for myself.
Accepting what doctor's say even when you have doubts
Put your hand up if you are like me and were taught to accept everything that a doctor said as gospel, even if you knew it wasn't right because they are the experts. *Ps I've thrown both arms into the air.
During this time, I had tried to "advocate" for myself by constantly going back to the doctors; you know they all say to come back if the pain becomes worse and it was. My presence alone apparently wasn't really advocating.
I was sick; so sick. My partner didn't know what to do. He'd never experienced ill health and was pretty (damn) useless. I was so tired and my pleas for their belief in what I was telling them was dismissed as "You are not a doctor, you do not know what you are talking about" - Quote.
What fight did I have left? I was too busy fighting for my life. I didn't have it in me to argue with the professionals.
I was right about my symptoms and complications
My in-laws put me on the next flight to them and discovered I was right; it wasn't a hernia. My bowel had perforated during pregnancy and that burning pain that had now consumed my ability to breathe was turning my organs septic. I almost died.
Luckily I survived. It was the most awful time of my life but it taught me some very valuable lessons and made me the fiercely protective advocate of myself and others.
I know my body best and know when something is wrong
After I recovered, I swore from the very beginning that I'd never allow myself to be dismissed again. I knew MY body and MY disease better than anyone. If I knew something wasn't right, I'd never allow myself to go against what my instincts were telling me. I never let a doctor dictate the management of my disease.
Treating IBD should be a team effort
I have nothing but admiration, respect, and love for some doctors, but only those who recognize this one vital part: this is a team effort. This is not me against them, its about working together, earning teach others respect and sharing our mutual expertise of this disease.
We are all working towards the same outcome and goals.
I hope that you all learn something from my disaster without needing to experience it yourself. Believe in yourself, trust your gut (instinct) and from the very beginning make sure you being heard. If not, you owe them nothing, get another opinion.
This is your life. Fight for it when you need to.
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