Taken Seriously

"No, it shouldn't be causing that. You are not really feeling that."

I can't begin to tell you how often I hear cries from others suffering brain trauma that report after seeing their doctor that they were ignored, talked over, or told that they were imagining things. The feeling of invalidation, abandonment, and outright confusion is awful. It is ok to be angry when you don't feel heard. Say it in a professional and supportive way. I have a few things that help me to be heard and address concerns when I see my doctor.

1. Write it down. Make and keep a list of questions in a dedicated spot that you will take with you for appointments. Be sure to leave space for answers. This provides clear guidance of what is going on and specific concerns you have as well as the answers from your doctor.
2. Request records. I am always requesting records of the previous notes at my appointments. This allows me to keep my own copies and often doctors do not have things organized from other providers unless they have a concern. I have provided copies to my rehab team as needed and this has helped to ensure clear and professional communication between all members of the team. In a few circumstances I caught how my notes had not been recorded properly, this could have created problems. With my copies it was able to be resolved correctly.
3. Have an advocate. This is a huge emotional experience. My mind does not recall everything well when it comes to appointments and reporting symptoms. Another person, one close to you can stay focused and ensure that needs are addressed. They also provide an additional sounding board if concerns arise.
4. Keep a calendar. Log things such as activity level, foods, and symptoms as needed. If you report severe headaches but are not being taken seriously, log them. No one can argue with a calendar showing that you are having severe headaches three to four times per week. (This was one tip I tracked before that helped them find my tumor to begin with.) Tracking my food intake helped me to identify that sugar and processed foods were increasing my pain levels and bad days, by decreasing those and changing my eating I was able to help reduce my own symptoms.
5. Be approachable. Develop relationships with supportive providers. All doctors have nurses and assistants that they trust and work with. Building positive relationships with these people will help you to be heard and taken seriously. When the team becomes invested in you as a person, your case will receive the attention it needs. They are in this field because they want to help, appeal to that. I believe firmly that my neurologist saved my life. I have no problem telling him that. By working with his team, I am also able to get the emotional care I need.

You can be heard. You can stand up for yourself in a kind way. You can provide records of dates and times that your symptoms are problematic. It is possible to do many of these things on your own, if necessary. I still bring someone along sometimes when I need another perspective. I accept that my brain is damaged. My memory is terrible. So, I need help. Look at what you need. You can do this. It is possible.