Misdiagnosed and Misunderstood
It seemed as if it crept up on me over the course of about seven years so I just ignored the symptoms like that frog in boiling water. First it was flu-like symptoms that hit me so badly, the room was spinning and I couldn’t stand up. Then it was the migraines that didn’t go away for weeks. After that, crushing fatigue and arthritis grabbed a hold of me.
The doctors said ….
You have lupus.
You have early onset osteoarthritis.
You have early onset perimenopause.
You have chronic fatigue.
You have fibromyalgia.
You have dementia.
And when one doctor finally told me it wasn’t any of those – that I had Chronic Lyme Disease, I was initially elated because I thought that meant a cure.
But I was wrong, because there is no cure for Chronic Lyme Disease. It’s a sneaky little spirochete bacteria that burrows itself into your joints, your spine and your brain. It takes over your internal communications like your neuro and cardio systems.
When I told my friends and family, they didn’t get it. They couldn’t see it. I got advice like, “Just get out more. Think happy thoughts,” or “Exercise more.” What made it worse was that the medical community is generally misinformed. Many don’t think Lyme can cause long-term issues and some are told that a simple round of antibiotics will fix it or that it doesn’t exist in their state. We are treated like crazy hypochondriacs at times.
Even Social Security Disability Insurance didn’t believe me. Lyme Disease isn’t on their list. I got denied for 4 years until I finally got a new lawyer and a lump sum payment.
And because I wasn’t overweight and I “looked good,” no one understood how sick I was. I was spending about 16-18 hours in bed and that continued for about three and half years. I dropped out of activities, I stopped going to my kids school field trips, I had a hard time attending the kids’ sports functions and helping out at my son’s 4thgrade Christmas party for an hour and a half put me in bed for the next 5 days. Life was just about existing at that point.
I remember the day I finally confronted myself with the fact that my mind was going. They had diagnosed me with cognitive disorder/dementia and my intelligence was one of my proudest assets. Without that, I felt like there was no purpose. I could barely concentrate long enough to have a short conversation and about 30 seconds into it, I couldn’t remember the topic at hand.
When I saw the doctor, he told me that my body was that of an 80 year old even though I was only 38 at the time. He told me I needed to treat it as such and accept that I would never get it back. He told me to lower my expectations of my future.
I returned home that day more numb than I had ever been. I called my sister to beg her to tell my children who I was. They learned to be quiet because mom was sleeping and I felt they were growing up without the guidance of a complete loving mother. I was afraid they would never know what I stood for or who I really was. I didn’t have the energy to teach what I so desperately wanted to share with them.
Many nights I ended up sobbing on the cold bathroom floor, huddle on the little floor mat with the moonlight streaming in through the window. It was at night that I cried because I didn’t want anyone to see me or wake my sleeping husband. I had to put on a strong face during the day.
And that’s when the awful thoughts started passing through my head about how to end it all. Thing was, I wasn’t truly interested in ending my life. I just wanted the physical pain and mental misery to end. I wanted to be able to participate in my own life. I regretted all the times I had told myself, “later,” because I had much of a future. I was bitter for all the times I put myself last – staying home to take care of the baby instead of going skiing with the rest of the family, not taking that trip because of the money, or thinking of all the things I’d do after the kids went to college.
I wondered if this was truly how the next 40 to 50 years of my life was going to be. Was it going to be a long drawn out death without really living? Feeling all alone? Would I ever be me again?
Was I going accept what the doctor told me about that 80 year old woman he said I was? Or would I figure something else out so that I could be the 40-ish woman that I wanted back?
Truth is, it’s not as easy as flipping a switch and changing your mind; however, when my resolve changed, my search for answers became more serious. I waned to meet my grandchildren-to-be one day! That’s what fueled me when I wanted to give up.
I tried so many crazy protocols just to see if it would work. I used herbs instead of pharma and alternative modalities like a rife machine to help kill off the bacteria. Finally, after years of treatment I have most of my energy back. I’m able to travel the world. I’m able to fulfill some of those regrets I had. I was even able to ski again.
I know that fateful day (actually, there were more than one), my decision could have gone either way. Now when people ask me how they can help when they have friends with disabilities, I say, “Listen. Believe. And let them repeat themselves a zillion times without getting tired of hearing it. Hold their hand. Let them cry. Tell them the world would not be the same without them – and tell them why so they believe you. Bring them dinner even if they tell you not to. Take their kids even if they pretend they don’t need help.” In short, be there for them.
Becky Bugala, contributing author of The Waiting Room: Invisible Voices of Lyme, mom of three with two children having Lyme Diseases said, “[Lyme Disease] robbed them of their health, education, friends, and sometimes family. In addition to their symptoms, they have dealt with misdiagnosis, disbelief, an utter lack of help from traditional medical professionals, leaving us all feeling frustrated and helpless! It has been a very lonely journey for our family. I have often said, ‘If the kids had cancer, the entire community would rally around us.’ There would be fundraisers, offers to help galore, and…casseroles.”
Vickie Gould is a book coach and business strategist, best selling author, and speaker. Her passion project anthology book The Waiting Room, highlighting the struggles of Lyme Disease, hit best seller in May of 2018.
Vickie helps entrepreneurs to write, self-publish and leverage their own business books to share their story, grow their following, and create more impact, reach and clientele. She has written 10 best sellers and helped nearly 100 others to become best selling authors as well. Get her free template, “5 Secret Strategies to Write Your Book Quickly” at her websitewww.vickiegould.com