The Importance of Health Advocacy
I haven’t been feeling well since last Fall. I was under a lot of stress in September so I thought it was just remnants of that, but as time went on and I continued to develop more and more symptoms, I knew it was time to visit my doctor. Now you would think that my being involved with ELM™ | Maine for the past couple of years would mean that I would go to a Naturopath or at least an Integrative Doctor, but to be quite honest, I just hadn’t made finding another practitioner a priority. So, in November I went to my traditional medical doctor for a physical since it had been years since I had any bloodwork done. They listened to my complaints of having chills, body aches, periods of extreme fatigue, neck pain, dizziness and a persistent sore throat. They tested me for everything under the sun. Mono, Lyme, Strep, Thyroid and all the usual bloodwork. All the tests were negative and all my levels were in normal ranges so they sent me on my way and told me to come back if I didn’t feel better.
Fast forward two months and many more symptoms later and I decided to return to my traditional doctor again. This time, the doctor wasn’t available so I saw a Nurse Practitioner who was assisted by a Nurse Practitioner in training. I explained again all the symptoms I continued to have from the last visit and the new symptoms I had developed including joint pain, especially in my fingers; numbness in my hands and fingertips; headaches; depression; memory fog; involuntary muscle twitches in my eye and legs; and flashes of lights in my right eye. The Nurse Practitioner took note of my symptoms and then left me alone to be examined by the trainee. She started running me through a series of neurological tests and I immediately had flashbacks of going to that same office with my now deceased father a few years back and seeing those exact same tests performed on him. I started to get emotional and when the trainee asked me a question my voice cracked. She immediately asked if I had been suffering from depression. Didn’t I include that in my list of symptoms? Seeing as she had forgotten, I said, “Yes, quite a bit.” I didn’t even finish my sentence and she said, “Would you consider taking something for that?” My response, “Absolutely NOT!”
After my examination, the Nurse Practitioner returned and consulted with her trainee. She then asked me which symptom was bothering me most and I answered, “Joint pain.” She said, “Well, then I would like to send you in for some inflammatory tests to see if you might be suffering from Rheumatoid Arthritis.” I said, “But how would that explain all the other symptoms I have? From my research, I believe I may be suffering from Lyme Disease. Isn’t there another test you can do that would check further for that?” And her response was….wait for it…..”We understand that some people believe in Lyme Disease, but we don’t recognize that here because it’s not in our books and we aren’t trained on it.”
This is where my inner advocate and fierce protector came out and said, “Well, I guess I need to go someplace else then.” Now I will say, she was extremely polite and friendly throughout this conversation and she did offer to give me a referral to a Naturopath, but I politely declined and said I was all set. I left the office with a thought of, “I wonder how many people get sent for unnecessary tests and are misdiagnosed because they don’t speak up for themselves?” Fortunately, I had a couple people refer me to a doctor at an Integrative practice who specializes in Lyme and was able to visit them within the next week. Diagnosis: Lyme Disease and possibly a couple other tick co-infections. As of this writing, I am still waiting for lab work to come back with a definitive diagnosis, but from what I understand those aren’t fail proof so I was started on treatment since I have all the tell-tale signs. A week later and I am already seeing improvement.
This scenario was not new to me. I had been there before when my husband, mother or father was sick. I would accompany them to the doctor or visit them in the hospital after an illness or surgery and time and time again they were dismissed about their complaints. I was always astounded when they wouldn’t ask questions about what was being told to them. They had the mindset of, “Well they’re the doctor, so I should believe what they’re telling me.”
I remember when my father was first diagnosed with Colon Cancer and was started on medication. I wanted to help him fill his pill box so I took all the new and old bottles of medication for his many illnesses and lined them up on the table. It looked like he could have started his own pharmacy and the worst part was that he didn’t know what pills he was taking for which disease! His response when I asked what he was taking it for was, “Because the doctor told me to.” After doing my own research and asking questions, we were able to remove him from a few of the pills he was taking because, after consulting with the doctor, he said they weren’t necessary anymore and he should have stopped them a long time ago. Ugh.
I am a firm believer in being your own advocate, especially when it comes to your health and I highly encourage people to go to the doctors with their loved ones to be an advocate for them. It’s always nice to have another set of ears when you have a lot of medical information coming at you at one time. If you don’t have someone to go to the doctor with you, then I would suggest hiring a health advocate. Some professional advocates specialize in researching the best available treatments and can assist you at home or in the hospital. You can also ask your local hospital staff to recommend a patient advocate. In fact, some hospitals and nursing homes employ advocates who work on patients’ behalf at no charge. Another option is to hire someone from a home health aide company or organization. These advocates work by the hour and can be an affordable option.
A health advocate can:
- Ask questions or voice concerns to your doctor for you.
- Compile or update your medication list.
- Remember your medication regimen and help you follow treatment and instructions, including asking questions about your follow-up care.
- Help arrange transportation.
- Research treatment options, procedures, doctors, and hospitals.
- File paperwork or assist with insurance matters.
- Ask the “what’s next” questions, such as, “If this test is negative what does it mean? If it’s positive, will more tests be needed?”
I know my story isn’t unique and many people who read this will probably relate it to something that happened to them or someone else. My hope in sharing my story is to let you know you are not alone and that it is ok to ask questions of your healthcare professional and seek advice and treatment elsewhere if you feel you are not being heard. Yes, your provider may have a degree that you don’t, but that doesn’t mean they know everything and ultimately you are the expert when it comes to your own body and how you feel.