How To Find The Help You Need
A Guide To Navigating A Medical Minefield
After previewing this guide in Soulful Sunday, I received many requests for the complete version.
These are the steps I took to find the help I needed.
1. Learn to Advocate
Being an advocate means taking control of your care. You must become informed and have the right people to help. If something doesn’t feel right, trust your gut!
My father was a physician, and many of his friends were too. I thought every doctor was as conscientious as he was, taking home a list of patients’ phone numbers after a day of surgery and calling each person to check in. This is the world I knew until I became ill.
I quickly learned my father was not the norm. Becoming an advocate was a necessity.
Knowledge is power. To get to the bottom of the mystery, I began by searching medical journals and research databases. PubMed became my closest friend. This is not for the faint of heart. Many people do not have the patience to navigate medical journals and research studies, looking for information, clues, or new insights. Some may be too ill to do so. If you need help, ask a friend or family member or consider a medical advocate.
Once you’ve gathered research, analyze it for relevancy and sort it by categories. Create a binder or system to organize the information. Relevant information is any data point that may explain a symptom, a change, a test result, or answer a question. At first, you may not understand what you’re looking for.
The more well-versed I became on topics such as the immune system, the nervous system, virology, and infectious disease, the easier it became to correlate the research to facets of my illness.
On day one, start a journal of questions and keep it close. Take it with you to every appointment and ask questions. If you get pushback or an unwillingness to answer, consider finding a new doctor.
If your questions are met with arrogance or annoyance, rest assured you will not find what you’re looking for. I stayed much too long with many doctors, hoping it would improve. It never did.
5. Track and Review
If an illness becomes prolonged, it gets difficult to continue this process. It can become overwhelming, but tracking your symptoms or progress and reviewing results and notes from each appointment are essential.
While you may have access to test results on a portal, you generally do not find the notes from an appointment there. You need to request them. Before you leave an appointment, ask for a copy. Some offices will provide it easily. Many will not, and you’ll have to call several times before you receive them.
Most patients don’t do this. Often the answer lies here, and it’s critical to review the details as they come in, not months or years later. Had I done this, I would have seen the relevant test results that multiple doctors ignored.
6. Be Objective
Although it’s difficult, try to look at the situation objectively. Think about what happened before you became sick. Where did you go, what did you do, who were you with? When did things change? What was the first symptom, and what came next? Did you notice something small that you brushed off? Be as objective as you can and document everything in the journal you started.
7. Self-Care and Mindfulness
Life may change dramatically if your illness continues and you have no answers. The result is stress, worry, and anxiety, which can make your condition worse.
Soon, your life could become unrecognizable. This is when prioritizing self-care is critical.
A chronic illness takes its toll physically, emotionally, financially, and spiritually. Staying focused and calm helps manage the changes.
A Mindfulness practice helps you stay in the present moment, maintain a positive mindset and build resilience. I had never meditated before, but I learned how!
8. Find Communities of Support
I didn’t have the benefit of supporting communities in the beginning. As years passed, I needed to know I wasn’t alone. It was a patient advocate that led me to the right support network. That group was the first of many to become invaluable, and I soon found clinicians that looked at my files in a new way.
If your illness has a name, it will be easier to find a support network. If a google search does not locate a resource, check Facebook, as there are many patient communities. Try the library or bookstore too for titles that may be relevant. Many books will contain resources. The patient advocate that led me down the path I needed was the author of a book I found on Amazon. After reading the first chapter, I knew I had to speak with her, and by the next day, we were in contact via email.
9. Know That You Deserve to Find Help- Building Resilience
There were many times I wanted to give up.
I was tired of tests, appointments, and waiting rooms.
I was tired of medical providers’ arrogance and gaslighting.
I was exhausted by insurance companies who denied claims and made me jump through hoops to secure much-needed treatment.
Resilience helped me when I was at my lowest point. I thought of my illness as an enemy-one I refused to let win. As tired as I was, it was more important to get answers and my life back, even if it looked different than the one I had.
Most physicians have 15-20 minutes to see patients, 30 minutes if you’re lucky. Make it clear from the minute they walk in to the appointment that you have questions. One specialist made a point of turning toward the door with his back to me mid-sentence. One day, before he moved to walk out, I asked what he would do next if his wife or daughter were in my shoes. He wasn’t expecting the question. He didn’t have a good answer, but I made my point and began looking for someone else.
10. Get Professional Help
Initially, it was anger that drove me to keep looking for answers. Anger that so many physicians overlooked critical information and refused to consider what they didn’t know. Speaking with a professional was an essential part of my process and helped me let go of my anger and accept my new normal. Finding the right therapist wasn’t easy either. I interviewed several. Some were defensive when I explained how I had been treated. That was a sign to keep looking.
11. Know Your Why
Everyone has a reason to get well. Remind yourself of your why if you start to lose hope, and keep pushing forward.
For many years, I wrote daily. It helped me confront my deepest fears, ask questions and clear my mind. Some days I was hopeful. Some days were very dark.
If you don’t like to write, do something that you enjoy. Listen to music, dance, read a book, binge a Netflix show, pray. Find something that will make you smile, laugh, or give you peace, even for a moment. In those moments, you may find what you need to keep moving.
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