By These are difficult times. Those in the battle of Lyme disease have faced the struggles of being ill without an accurate diagnosis for extended periods of time. Often, people are sick for years or even decades without a diagnosis.
What do you or a loved one do when you are sick and others don’t believe you?
How do you endure from day to day?
How can you afford to seek further health care treatment, when you can’t work and provide for your own livelihood?
AND what do you do when it is your child that is sick?
In the fall of 2009, my daughter’s sudden memory loss without a diagnosis and treatment plan led me to various hospitals and health care providers to seek medical care for her. My daughter had bizarre symptoms that were unexplainable. My daughter was examined and questioned with me present, and with me NOT present. I know the medical staff at two different hospitals, and many family members, thought I was “crazy”.
When I told my daughter’s pediatrician, I was seeking treatment from a Lyme Literate Health Care Provider, he said “good luck with that”. He further stated that I was wasting my money and time. However, after a month and a half, the mainstream medical professions had no diagnosis or treatment plan for my daughter who was getting sicker and sicker each day.
What do you do when the health care providers begin to think you have Munchausen Syndrome by Proxy? This is a psychological disorder marked by attention-seeking behavior by a caregiver, often a mother and often a nurse (or other health care provider). The caregiver seeks attention for medical care for exaggerated or fictitious symptoms for the child. The caregiver is often very caring and distraught regarding the child’s illness.
It is dangerous to be concerned with what others think of you, but if you trust the Lord, you are safe.
Proverbs 29:25
As a nurse, and a mother, I knew my daughter was gravely ill. I felt there must be answers to these mysterious and debilitating symptoms. But more importantly, I felt God had a plan and would provide for us.
Many of you know what it feels like to have symptoms that others can’t see; can’t feel; can’t understand; and can’t experience. This does not mean you are “crazy”. However, one of the symptoms on a Lyme Literate Health Care Provider questionnaire was: “Have you have been told this is all in your head?”
These are stumbling blocks which each one of has faced. Others doubting what your body, and what God, is telling you. As Beth Moore says “Satan is a lot of things, but he’s not particularly creative. He tends to stick with what works, and one approach that has paid off for him from the start is our low tolerance for feeling stupid.” (Chasing Vines, 2020). In other words, being told “this is all in your head”; or “your crazy”; or “your doctors are quacks”, are ways to be told by others that you are NOT smart.
Yet, there is hope in Lyme disease and other illnesses and struggles which each of us endure. LymeLight was written to help provide hope to those with Lyme disease. LymeLight can also help to provide hope to those struggling with any disease or “battle”.
I am willing to be an advocate for you, for your friends and your family. As we hear throughout the coronavirus pandemic, “we are all in this together”. Just as the media can provide facts, these facts lead to fear. The same is true with Lyme disease: the facts are overwhelming; the facts lead to fear. Let us learn to be “all in this together” and help provide hope to others today, tomorrow and into the future.
We are isolated now, because of the coronavirus pandemic. But there are always those that are isolated and alone, fighting physical and psychological battles. You know people with struggles. Let us build a community together with grace and mercy for those struggling. Let us love them and specifically, intentionally pray for those in need. We are called by God to be in this together. May you be blessed by God’s mercy and grace today.
Thank you so much for continuing to encourage and uplift everyone with your inspiring words.
Thank you so much for writing the book “limelight” and sharing your experiences with us. Knowing that I have been struggling with neurological issues, Maria, a friend of mine offered this book for me to read. Although I am not a reader I couldn’t put the book down and finished within a couple of days. I reference your book often as I face the discouragement of uncertainty of diagnosis within the mainstream medical community and at the same time questioning my confidence in the out of the mainstream practitioners. Thank you again for offering hope.
Wow. This book is so honest to what it’s like to go through a life-altering, life-threatening disease of a family member. Having to advocate for a beloved daughter, who through mysterious medical reasons doesn’t remember you, only to have the professionals, the doctors, not hear you when you explain, for the thousandth time, the gravity of what’s happening to your child. The emotions this book brings out in you are real. I cried. I was frustrated and scared. The trials both mother and daughter had to endure in order to traverse the medical runaround were heartbreaking. But God was working. His Plan was unfolding. This book makes the reader more aware, makes it ok, in fact, critical to question and re-question your medical provider if you feel you are not being heard. Someone will hear. I would highly recommend this book to everyone who has or will, at some point in their life, have to endure a loved one needing medical attention!
Linda, I feel like you have told MY story with my daughter as well….we share such a common bond, and every time I read one of your blogs, it gives me peace to know that through Gods grace answers will come forth. Thank you for sharing your story, and giving us hope! Xo