Irritable Bowel Syndrome (IBS)

Author's Remark: My therapist gave me a homework assignment; write a letter to the doctors I had before finding my current team. As I let the words flow, I realized that so many others probably feel exactly the same way I do. This letter will never make it to my doctors, but writing it helped me release something I have been carrying for over a decade. If any of this resonates with you, I hope it encourages you to do the same.

When you decided to become a doctor, you knew it was going to be years of schooling, residency, and a lot of money. You probably decided to be a doctor because you thought you would be helping people; why else would someone choose a career that takes years of schooling and thousands of dollars? You took an oath to do no harm. You wanted to help people, but the system isn’t always built for that, and I get it. You got into medicine to help, not realizing you’d have patient quotas and only around 15 minutes with each person you see. How can you possibly help people on a 15-minute time limit? I can tell you that it’s not an ideal time frame to see patients, but that listening to what they have to say is probably a good start.

I came to you so many times in hope of getting help. You told me it was anxiety, my diet, my exercise, my weight… Anything and everything you could use to dismiss me. I suffered for over ten years with chronic whole-body symptoms. You said my headaches meant I needed to see a neurologist, joint pain meant seeing a rheumatologist, debilitating stomach problems meant going to a gastroenterologist, and severe cramping meant going to a gynecologist. So many visits to the doctor, so much bloodwork, so many different labs and procedures. Did you think I wanted attention? Did you think I wanted to spend so much money and free time talking to you for fun? Did you ever stop to think that, maybe, this wasn’t in my head? Maybe a young woman who has a laundry list of symptoms across her whole body may have something wrong? Maybe I should stop trying to treat symptoms with meds, refer her to every specialist under the sun, and look at the bigger picture on why she feels this way? No.

I spent over ten years of my life going to doctors to try and figure out why I felt the way that I do. I left a dream job and career field I was passionate about, and quite frankly really good at, because I was too sick to be working on an ambulance running 911 calls for 12-15 hours straight; I cried when I had to send my letter of resignation. I had to leave early from not one, but TWO bachelorette trips because I got severely ill. I love going out and riding my motorcycle, and it is one of the things that brings me joy; I could ride for hundreds of miles in a weekend, but I became intolerant to heat and worry about being too far from home because having flares is crippling. I carry a mini pharmacy of rescue meds in my bag everywhere I go now. I have severe anxiety about going out in any capacity because of the fear that a flare will cripple me. I watch my husband fight tooth and nail going to doctors with me because they take a man more seriously than the woman living with the illness. I have had to grieve the person I was, give up things I love and plan my life around my illnesses that debilitate me, all while you tell me its anxiety, IBS and that you can’t do anything.

I now have an amazing team of understanding doctors that have taken the time to listen and take me seriously. I am pushing and advocating for myself and my life. The craziest thing has happened; I got a diagnosis. I suspected this was part of my problem all along, but you didn’t want to listen or look at the big picture. I have a diagnosis that has comorbidities that will likely also be diagnosed now, and I have treatment options to help my quality of life improve. I have hope now that I will be able to get back to feeling like myself and living my life how I want. I have hope because someone took the time to listen, look at the bigger picture, and not just write me off or send me to the next specialist.

I will say, your gaslighting has caused me more trauma than I care to admit. When I received a diagnosis, I was happy at first; I felt like things were finally clicking into place, finally making sense. A day or two went by, and while my family wanted to celebrate me finally having an answer, I started wondering, “do I actually deserve the diagnosis?”. I questioned if I was sick enough, in enough pain, or if my diagnosis fits; then reality hit and I looked at all I have lost. I see that I do deserve the diagnosis. I have lost so much of myself to being sick; I have had to cancel plans, miss major life events, missed career opportunities, and had to experience a level of loneliness and isolation I wouldn’t wish on anyone, all because I wasn’t taken seriously.

I know this is only the beginning of my journey back to myself. I know there will be bumps and things will suck at times, but that’s just life. I have hope now for continuing my care and rebuilding parts of what I lost. I have lost too much of my life to invisible illnesses, but I won’t lose anymore. Now is the time to rebuild and have hope; thanks to an amazing support system and doctors that listen and care, I can start that after over a decade of suffering. You had all the puzzle pieces, just like they did, but they didn’t dismiss me. You probably thought I was a hypochondriac, and I can see why you might think so, truly. Had you put your opinions aside, listened to my symptoms, pain, and read my charts, you could have seen there was something real going on. I know you are crunched for time, but you can listen to your patients and take them seriously in the time you do have. After a decade, I have some answers and it’s no thanks to you. At the end of the day, you did no harm, right?

#heds #ADHD #ChronicIllness #medicalgaslighting