My advice to the patient who is hurting, scared and looking for help

Be the best patient you can be to prepare yourself for the opportunity that can come your way when you are seeking medical help. Be the patient that the doctor wants to help. This is a bit like a job interview and the patient decides on who they will trust with their medical care. Doctors also make choices. Patients need to do everything they can to improve their health and want to get well. Don't give the doctor your diagnosis unless it has been diagnosed by another doctor. You are there to talk about your symptoms and let them do the detective work. No one wants to be told how to do their job. Do ask what your doctor thinks about your symptoms and what it could indicate. Don't use specific medical terminology unless you are an established patient with your doctor. A new patient may be perceived as diagnosing themselves and creating a challenge of opinions for the new physician who is trying to do his job.

My advice is :

1) Gather your support team.

Reach out to anyone you know who has overcome medical adversity who you can look up to and learn from. I also talked to my friends about my fears, and the health insurance we had had a program for counseling by nurses about health topics and I talked about fear of surgery and preparing with them. They would call and check on me. Other options are reaching out on Connect to other patients and watching Ted Talks about overcoming fear or talking to a counselor.

2) Identify the problems and learn from them.

Write down a history of the events in your life that have a connection to your fears that you face now and look for a pattern. You were not born with these fears, and if you work through them, you can overcome them. Get all your medical records, reports and imaging. Look up everything on them so you can understand what they say. You may discover that the doctor doesn't understand your symptoms or is going down the wrong path. They look for a differential diagnosis of other conditions that your symptoms could indicate. It is their job to try to make sense of overlapping symptoms. Perhaps you have been dismissed, and another medical person could help you understand the problems, for example a different doctor, nurse, insurance counseling program or physical therapist. Look up current research and treatments for your condition including different surgical procedures and the risks.

3) Trust yourself.

Fear of the unknown is a strong adversary. Learn all you can about your medical situation. Ask lots of questions. You, the patient, and your doctor should work as a team together for your benefit. If it doesn't feel like that, perhaps you have hired the wrong doctor. Your outcome depends on good communications between you and all the medical personnel. The doctor forms an opinion based on the details you provide along with their testing and imaging, and if crucial information is left out, it can change the outcome and decisions that are made. It may be hard to make a decision as a patient, and this is the reason that second or third opinions or more are needed sometimes. For surgeries, there may be different ways to solve the problem, and different opinions and solutions to compare. It's all about choices and choosing the treatment that is right for you that has been informed by a trained professional. Get as many specialist opinions as you need.

4) Believe.

Why me? It may seem unfair to have a challenging medical problem. Instead, ask yourself, what can I do to help myself? What decisions can I make now that will change my future? What should I do to distract myself from worries and fears? What if I make the wrong decision?

If there is a voice inside you telling you not to speak up, ask yourself where did this voice come from? and who told you to keep quiet? Things in our past and upbringing can influence us more than we realize, and we must consciously choose our future for ourselves.
If you have taken control of your health and asked enough questions, you should be on the path to answers for these questions. Reach out for help and emotional support.

Patients have a lot of power in the success of their outcomes if they are fully onboard and believe that they will have a positive outcome and future. Be vigilant. Advocate for yourself. Look up current research because medicine is always changing. Realize that medical problems can sneak up and you and be related to other issues you have that may increase your risks. Often issues can be managed. Understand the risks of medical treatment and drugs. If something doesn't seem right, ask about it, and if the answer isn't satisfactory, ask someone else. Keep asking until you find answers. Doctors are people, and people can make mistakes.