A day in the life of a Lymie is vastly different from that of the “average,” healthy individual. Even among Chronic Lyme sufferers, there is a spectrum of symptoms and experiences. Sharing these experiences helps us find common ground in similarities, and understanding in differences.
Is Chronic Lyme Real?
Most people have no idea what dealing with Lyme is like. Without a friend or close family member to inform them, most never discover the true nature of Lyme. There are many who think that Lyme symptoms are exaggerated. Some even believe Chronic Lyme to be fake; a disease for hypochondriacs only. With all of these opinions out there, we feel it is vital to answer to these naysayers. Not only is chronic Lyme real, but so are its sufferers.
In order to illuminate the Lyme life a little more, we interviewed 4 chronic Lyme sufferers. Among the group are Erik, a 38 year old man with Late Stage Chronic Lyme disease; Laura, a woman from Lino Lakes, Minnesota who was diagnosed eleven years ago at the age of 23; Rachel, a traveling wedding photographer; and Adrianne, a 2014 luge Olympian from Calgary, Canada who now works as a chef and holistic nutritionist.
Reaching a Lyme Diagnosis
When attempting to reach a diagnosis with Lyme, everyone has a unique, usually upsetting story. For Erik, it took seven years to come to the right diagnosis, “I have been sick since 2008, and no one could figure out what was wrong with me. I wasn’t diagnosed with Lyme Disease until 2014 after an Igenex test.” Seven years is far too long to go undiagnosed. Dealing with chronic Lyme is already hard enough, without adding the fear of the unknown. How do you battle something you can’t see or name?
When attempting to reach a diagnosis, Laura was sent on a wild goose chase, “I had tingling in my toes and part of my heel, and when I went to the doctor, he acted like I was a hypochondriac. He told me to come back when it was up to my knee.” She then visited a chiropractor, who said it was most likely a pinched nerve and proceeded to treat her with a series of adjustments. This wasn’t the problem, and her symptoms continued to worsen.
Many doctors treat Lymies like they’re overexaggerating, or making it all up. It is of the utmost importance to keep looking until you find a doctor that both believes you and is willing to do everything they can to help.
Un-Predicting the Future
After being diagnosed with Lyme, many find that their days become unpredictable. Arianne places her days into one of three categories; normal days, bonk days, and wave days.
She describes normal days as, “days where I am feeling myself and have the energy to live a relatively normal life, however this does not include the ability to move physically as I would like (hiking, biking, working out).” Considering the level of activity she engaged in before Lyme, this “new normal,” can be discouraging.
Her bonk days ( the worst of the three) are completely debilitating. She is overrun by symptoms and can’t get anything done. Arianne describes her symptoms hauntingly, “It feels like I am getting the worst flu I’ve ever experienced. I can’t breathe properly; it feels like I am at a high elevation, unable to get a full breath. Then the pain begins; it feels like it’s in my bones, in my nerves and in my muscles. The depth of ache is so real it feels as if my cells are screaming out in pain.” Luckily, though, it has been quite a while since she has had one of these episodes.
Recently, her days have mostly been, “wave” days, where the symptoms come and go as they please. She has to take these days hour by hour, “One hour I can feel normal and myself and then in the blink of an eye I have full body pain, nerve pain, brain fog and dizziness and must lay down immediately out and ride it out. I might feel back to normal in an hour, 3 hours, or not until tomorrow…it’s never the same.” The unpredictability of this type of day is exhausting.
Say Goodbye to my Little Friend
This unpredictability seeps into every facet of life, including friendships. Making concrete plans with friends becomes a thing of the past when dealing with the symptoms of Lyme. Staying in contact with those you love is hard when you’re feeling poorly. One-sided relationships can only last for so long, and friends start to disappear.
Who Sticks Around After Chronic Illness Diagnosis?
Lauren was surprised by which friends stuck around and which ones didn’t. She found that, “It’s the more flexible friends who are willing to call when in the area and ask if I’m up for a ten minute visit. The friends who are willing to try again when I’m not feeling well. Those are the friends that have lasted. Friends who are more rigid and need concrete plans aren’t able to adapt to meet me where I’m at.” Being willing to understand when plans fall through is so important when supporting someone with Lyme.
Lyme is an isolating disease, rife with both mental and physical symptoms. Many Lymies feel like they can’t or shouldn’t reach out for help. Remain patient, remain open, and don’t give up—no matter which side of Lyme you’re on.
Learning to Lean on Loved Ones
Support is so important when dealing with chronic illness. Without help from those we love, many of us have no idea where we would be. For Rachel, her main support system is her husband. It hasn’t been easy, and there have been a lot of adjustments. Despite the struggles that Lyme has brought to their marriage, Rachel feels that it has strengthened them as well.
“At the end of the day it has made us a lot closer and has taught us how precious life is.” Being along for the ride for someone who has Lyme is a rough one, but that doesn’t mean the ride isn’t worth it.
Am I a Burden?
When receiving love and support from family and friends, it can be a challenge to not feel like a burden. Laura gets a lot of support from her parents, and struggles with this feeling. “I’m almost 35 and my mom puts my clothes away after she does my laundry, cooks my meals, and cleans the house. I’m always feeling guilty and like a burden.”
This notion is more common than Lyme wants you to think, and isn’t an easy one to let go of. Allowing yourself to be loved and cared for is a constant battle—a battle worth fighting.
One of the hardest things Erik deals with is the effect Lyme has had on his relationship with his son. “My son has never known me or seen my normal self. I try my best to do things with him, but it’s so hard to get on the ground and play with him.”
Lyme irreparably changes the family dynamic. Making the necessary adjustments is hard, and there isn’t any “right” way to do it. Letting go of preconceived notions of what your life should be like is no easy feat. Learning to find happiness and success in a new normal is an ongoing process. Find what works best for you and your family.
Lymies’ Advice to You
Arianne– “Be vulnerable. Vulnerability is not weak. In fact, I have learned that it is the most courageous and brave act that curates authentic connection with others. Self-care is of the utmost importance. There is no weakness in naps. A little humor can go a long way! Take the time to get quiet. Listen to your body, it holds valuable wisdom inside, however, you cannot hear it when you are encompassed by our society’s glorification of “busy”. Take time to just breathe. Speak kindly to yourself. The things we say to ourselves, we would never dare speak to others. Practice self-compassion. You cannot do this alone. Find your people, your tribe and ask them for help. I truly would not be here without my people.”
Erik- “Rest when you need to. Don’t overdo things because it will make you feel miserable after. Also being sick with this disease isn’t your fault, for the longest time I blamed myself for getting sick and still do quite often. So getting into the right mindset is key when trying to recover the best you can.”
Laura- “Keep looking until you find the right doctor, one who is willing to admit they don’t know what’s going on but is willing to keep looking and even do research on their own.”
Rachel- “Diet is everything. I noticed big changes when I made changes to my diet, and when I break them, I can feel it. I am young and I am human, so I try to live my life, but I just know that it comes with a cost now.”
We hope that in reading these experiences, you will find both comradery, strength and validation. Know that you are not the only one suffering, and we are here for you. Chronic Lyme is an isolating disease, but we can combat that isolation by sharing our stories with each other.
If you want to delve deeper into each of their stories, click HERE
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We are stronger together.