When living with more than one chronic illness or rare disease, it can feel like some doctors just hear white noise when they see you at appointments. When you mention a new symptom or concern, some doctors think “Oh, another symptom” or “This patient is being overdramatic and anxious.” You actually start waiting for a dramatic eye roll and a “Yes, what now?” type of comment.
Last year, when having a six-month check-up with a specialist physician (we can call her Dr. A.), I was in two minds about whether I should mention new symptoms. Having only been diagnosed for about two years with myasthenia gravis (MG), I was not sure if it could be related. So, I mentioned it. I talked about the discomfort I felt around my ribs, back, chest, shortness of breath and exhaustion. After mentioning it to the doctor, it was dismissed with a “nothing to be concerned about” and the template reply “exercise, lose weight and get more rest.” Dr. A. also said that “I need to remember I am anxious, and it can be related.” The discomfort and pain remained. I tried my best to cope with it or ignored it.
Fast forward 10 months later. I had to go for an incision hernia repair that formed due to the many laparoscopic procedures I had to remove endometriosis.
All the prep was done by the anesthetist with regards to my MG before being pushed into a theater. One of the older anesthetists then told her all the prep is not needed since usually MG patients are OK. I was not OK. I had such a reaction after being intubated that they battled for more than 90 minutes to get my saturation up to a safe level while experiencing some challenges with pulse and blood pressure as well. They called in three other anesthetists from other cases to come and assist. Needless to say, no surgery took place.
Why would my saturation fall dangerously low even though I was intubated? That was the big mystery. The anesthetist and surgeon sent me to a specialist physician (Dr. R.) to investigate. Various tests were done, X-rays taken and the reason discovered. My lungs were filled with pulmonary embolisms. Dr. R. asked me, “Was it painful to breathe? Did I have discomfort over my chest, ribs and shortness of breath?” I had responded yes for more than a year. He was horrified. The natural next question from Dr. R. was why didn’t I have it checked out I told him about my check-up 10 months ago, and why was the response from my doctor to “exercise, lose weight and rest?” The doctor just looked at me and asked if I realized the danger of embolisms. Needless to say, I was immediately started on blood thinners and am hopeful I will start feeling better.
All the “what ifs” have been running through my mind. I’m grateful Dr. R. decided to get to the root cause of what was going on with my health, but it shouldn’t have taken such a scary episode for medical professionals to pay attention to what I was saying.
I have learned that if you are in doubt, or your doctor is dismissing you, don’t ignore your symptoms.
Don’t doubt yourself. We need to be our own advocates.
And to the doctors treating us, please listen and don’t dismiss us, even though we are more complex patients.
Remember, the answer is not always “You are anxious,” or “Lose weight and exercise.” We deserve medical care that digs deep and helps us connect the dots for our health and well-being.