Not everyone reacts the same way to an injury/illness, and physicians have the difficult task of interpreting a patient’s response in real time during a potentially life-threatening event. I must remind myself of this every time I seek medical attention. You see, the simple fact is… I do not have a “normal” pain response. If my pain is mild to moderate, I am probably cracking jokes, telling stories, laughing, and generally ignoring it. If my pain is severe, then I am usually quiet and focusing inward. I am probably not your average patient!

There have been several big events that showed me just how different I was and served as a training moment for the doctors who cared for me.

Situation 1:

I was in a bad automobile accident. The vehicle I was riding in hit a bridge pillar head on. I was crushed in the backseat between the roof and the seat. I argued with the ambulance drivers asking that they save my Subway meatball sandwich. At the hospital, I argued with the nurse that I did not want a tube put down my throat. The plastic surgeon on call had to rush to the hospital because my face had been mangled. When he arrived in the room, he didn’t realize and was not told that I was awake.

He started manipulating the skin on my face to get a better look at my skull and jaw bones. I did not react well because I was awake and had not been given any pain medication. The medical professionals had assumed that since I wasn’t crying, yelling, acting like I was dying, or begging for pain medication that I was not with them mentally. I was very much with them and focused on dealing with the excruciating pain by meditating.

I still have nightmares from this event, and regularly dream of fighting with doctors and nurses, telling them no and having them treat me anyway. The medical professionals were doing what they had to do to keep me alive.

Situation 2:

I presented to the emergency room complaining of stomach pain and an inability to go to the bathroom. I had a history of bowel issues (due to surgery from the auto accident and multiple sclerosis). The doctor seeing me in the ER did a physical exam and sent me home with instructions to drink more water and try an over-the-counter medication. Since I was cracking jokes, they didn’t take me seriously.

Later that afternoon, the pain became unbearable. I returned to the emergency room requesting more help. Another physical exam and this time the doctor listened more carefully and decided to run an x-ray. It wasn’t long after the x-ray happened that I was admitted to the hospital and met with a surgeon. My intestines had shut down completely and since this had happened multiple times before, the doctor wasn’t confident that we could get them going again. I was warned that I may have to live with a colostomy bag if they didn’t regain function.

Over hours of treatment, IV’s and enemas, as well as medications to stimulate movement I joked with nurses and tried to stay positive. By the end of the day, I was begging for something for pain, to which they responded it would just make it harder to go. To this day I must take my medical records with me to the ER when my intestines decide to shut down. Since my reaction to pain isn’t what they are expecting, they ignore the severity of what I am experiencing or write me off as faking it. I do not have a colostomy bag yet but have learned what it feels like as the intestines are shutting down and have a plan in place to deal with it.

Situation 3:

I was on disease modifying therapy #5 to try and treat my multiple sclerosis. I had allergic reactions to 1-4 with the worst of them leaving me bedridden for a few days. Upon receiving medication #5, I was instructed by the nurse and doctor how to administer the medication and that I may experience mild site reactions. They went on to say that hives would be normal and not to worry, so when the hives appeared during the first injection I didn’t worry.

Fast forward two weeks and I was covered head to toe in hives. With every injection they got worse. It was immediate! From the moment I started injecting, the skin swelled into large bumps that were painful and itchy. I couldn’t take it any longer! I had called several times on the phone with no solutions, so I went to the doctor’s office. I couldn’t believe that it should be this uncomfortable or that the hives should last this long. When I walked to the front desk at the doctor’s office, they didn’t check me in. The nurse came out, took one look at me, and sent me to the emergency room. I was having a horrible allergic reaction to the medication and it was becoming a dangerous situation.

What I hope you learn from my experiences…

Patients know what is normal for your body. If something seems wrong, it very well could be. Make sure that you have good written notes, explain yourself clearly, bring another person with you to help describe the situation. If you can’t do it on your own, seek help. My book My Best Day Journal was recognized by the National MS Society as a great way to communicate with your physician. It is modeled after the journal that I carry to help describe my conditions and what has worked in the past. But more than anything else, if the doctor you are sitting with is refusing to hear you, find another doctor.

Doctors, every patient is an individual and it will be important to listen to exactly what the patient is saying. Don’t immediately write something off because it is on the warning label of a medication, or because their behavior isn’t what you would expect. Your job, as a doctor, is incredibly difficult. You are expected to know a little about everything and a lot about a few things and use that information to diagnose at the drop of the hat. Do not be afraid to ask your patient more questions. Give them a tool (book or journal) to work on at home to help you understand what they are living with. You and your patient are a team!

In the end, there is never a one size fits all way to handle medical emergencies. Every doctor is different, and every patient is different. We all need to advocate for the best outcome for everyone involved. Mistakes can happen, side effects can occur, and things aren’t always as they seem.