22 'Embarrassing' Symptoms of Lyme Disease We Don't Talk About
If you live with Lyme disease (and/or co-infections), you know it can produce a number of frustrating and undesirable symptoms. Although there’s no reason to be ashamed of any symptoms or side effects you experience, it can still be a bit embarrassing when brain fog causes you to forget what you were saying mid-sentence, or when you’re out in public and a sudden burst of pain, fatigue or muscle weakness leaves you unable to move.
While it may be difficult to talk about some of the less-than-glamorous symptoms Lyme disease can produce, being honest and open about the many ways it can affect someone is an important step toward raising awareness of this complex yet under-recognized and often-misunderstood condition. That’s why we asked our Mighty community to share some of the “embarrassing” Lyme symptoms they’ve experienced – symptoms we may not talk about often, but ones that deserve recognition and understanding nonetheless.
Even though the symptoms of Lyme disease (as well as some of the effects it can have on your life) may be totally out of your control, it can still be challenging to grapple with the physical, emotional and cognitive effects the illness can cause. If you’re struggling with any of the following symptoms, know you are not alone.
Here’s what our community shared with us:
1. Memory Loss
“Memory loss. My family has to repeat things often and it’s embarrassing.” – Kailee M.
“Really terrible memory. I forget the names of people even after meeting them several times and it gets awkward. It’s not that I don’t care or am not paying attention, I just can’t keep information in my brain!” – Ashley S.
“Seizures. I know that it’s outside of my control and nothing to be ashamed of but I still don’t want anyone to see it. Also when my legs physically can’t support me and I have to crawl instead of walk.” – Stephanie A.
3. Mood Swings
“The up and down moods caused by Lyme. I am now very emotional, I cry very often and just can’t control it. Knowing that these emotions and mood swings are caused from the parasites helps me to feel like I have more control when they arise.” – Shelby C.
“I have emotional meltdowns from neurological Lyme and co-infections. In high school I experienced uncontrollable and out-of-the-blue crying spells. I had premenstrual dysphoric disorder, which is Lyme’s response to spikes in estrogen. I later developed bipolar depression because Lyme and co-infections trigger neurological dysfunction and brain inflammation. I have had panic attacks, episodes of euphoria, dysphoria, disassociation and rage. I have gotten into some nasty arguments and lost some friends as a result. It’s hard to control this dysfunction without antibiotics and a mood stabilizer.” – Sabine B.
4. Difficulty Controlling Bladder/Bowel
“Losing control of bowel/bladder function on several occasions probably tops my list.” – Nikki D.
“Lack of bowel control in the morning.” – Jessica L.
“Memory loss is a huge one but far more embarrassing is bladder control issues. I have chronic nausea and 99 percent of the time when I puke it’s so violent that I pee on myself, [which] fortunately hasn’t happened in a public place, yet. Probably will one day.” – Kathy M.R.
“Incontinence.” – Kelsey S.
5. Feeling “Loopy”
“Feeling loopy and actually having someone ask if you’re OK to drive. Haven’t had anything to drink in years!” – Jackie B.P.
“I know it’s [silly] but I get nauseous and an upset stomach so often that I feel like I ruin it for everyone when we go out because I always end up in the bathroom.” – Leah G.
7. Sudden Pain
“Cognitive issues that come at random times, plus the severe pain jolts in the face that cause me to gasp in pain, or verbally speak, ‘Ow!‘ People don’t know what is happening.” – Tanya M.
8. Brain Fog
“Out of all the pain and everything else probably the most embarrassing is the brain fog. I think most think I’m [using] drugs.” – Sean W.
“I will forget what I’m saying, mid-sentence. It’s like my brain hits a brick wall and there’s literally nothing else I can think of except for the fact that I’m embarrassed and can’t remember what I’m saying or remember simple words. It’s like being a prisoner in your own body.” – Jenna D.
“Forgetting things. Sometimes I forget what I’m talking about in the middle of a conversation.” – Jessica M.L.
“Getting extreme weakness and fatigue that comes out of nowhere. I will be doing something like going to the store or a social gathering and boom… I feel so sick I need to leave and people just don’t understand because they say you were fine just a little while ago. I fear they think I’m faking it but I’m not. I really feel too ill to continue.” – Jenny W.S.
“I have weakness in my knees that isn’t very obvious until I try to walk up or down the stairs. It takes me forever and I always need help and everyone always looks at me like ‘What are you doing? Can’t you go any faster?’” – Lauren S.
“Extreme fatigue and tiredness that leaves me unable to participate in events despite ‘looking just fine.’” – Rebecca V.
10. Yeast Infections
“I get persistent yeast infections from systemic Candida. Lyme suppresses the immune system and allows yeast and bacteria populations to grow out of control. I take antifungals and I cannot eat any sugar, alcohol, gluten, dairy, starches, some nuts and most fruits since these can trigger an increase in [my] symptoms. It’s embarrassing to have dietary restrictions that make me appear so high maintenance. But people don’t understand if I eat sugar it can mean I can’t have sex or sex is painful for me. Yeast overgrowth can also produce mood swings, IBS, bloating and inflammation, sugar cravings and it releases neurotoxins giving me additional brain fog.” – Sabine B.
11. Eye Issues
“Drooping right eye.” – Stacey P.
“When I’m tired my one eye twitches, closing my eye for no reason.” – Tanya M.
12. Loss of Independence
“I have been ill for 16 years at age 23 so there are many embarrassing things about Lyme disease and its co-infections that I experience. But I believe the most embarrassing is my husband having to be my total caretaker 24/7. Sometimes I can’t use my hands, sometimes I can’t use my feet and everywhere in between. He even has to help me use a bedside commode sometimes if he can’t get me to the bathroom. Just being unable to do pretty much anything myself makes me feel awful mentally and incredibly embarrassed.” – Kristen D.W.
13. Weight Fluctuations
“Brain fog and my weight gain/bloating (Hashimoto’s due to Lyme/co-infections) – and I’m a health and fitness professional.” – Cassandra C.
14. Muscle Twitching
“I have nonstop muscle twitching (fasciculations). At work I think people are tapping me so I turn around thinking someone’s touching me but it’s just my muscles twitching. So uncomfortable and embarrassing.” – Stacia P.M.
“Major anxiety and fatigue so bad I can’t even work.” – Mary-Kate M.
16. Excessive Sweating/Heat Intolerance
“Listing one is difficult. There’s the red, tomato-like face with sweat raining down my forehead and in between my girls. The uncontrollable shaking, one or both of my legs stops working and I fall. Passing out in the heat.” – Danielle A.C.
17. Canceling Plans Last-Minute
“I cannot count how many times I have made plans with friends, but had to cancel last minute due to a sudden migraine, paralyzing fatigue or severe depressive mood. I’ve lost friends over this as they just don’t understand, or think I’m a flake. I’m grateful for the friends who do get it.” – Elizabeth R.
18. Irritable Bowel Syndrome
“IBS – sometimes it’s literally diarrhea all the time and I can’t control it or leave my house because I’m always running to the bathroom.” – Cassidy S.
“The most embarrassing thing I have is paralysis. The paralysis leads me to be helpless and totally rely on others for everything, including going to the bathroom.” – Cassidy C.
“Itching all over the place nonstop. Even doing it while I’m asleep and waking up looking mauled by a tiger.” – Samantha J.F.
21. Cognitive Issues
“Cognitive issues. I used to be really good with words, but now I just sound ridiculous when things come out jumbled or I can’t remember a word.” – Faith B.
“Not being able to do simple math. I have my own soap business and math is required to figure out percentages of certain fragrances. If I don’t write everything down in great detail I end up calling my husband (an engineer) in tears because the math is too hard. It really isn’t, only my Lyme brain blocks me from doing simple tasks. It’s so demeaning.” – Jennifer S.B.
“I confuse words. I will think something in my head, and it won’t come out the way I thought it. I’m forgetful and sometimes I have to describe things differently because a word has suddenly dropped from my vocabulary.” – Emily K.
“Not being able to concentrate and getting confused over the simplest thing.” – Cally J.S.
22. Lack of Acknowledgement and Awareness
“I have Lyme disease. I have many of the symptoms of Lyme that everyone here has expressed. But regardless of my own symptoms… the most embarrassing symptom for me right now is being a medical professional and seeing the devastation that this disease has encompassed and the lack of acknowledgement and treatment the medical field gives this disease. It’s embarrassing that I like many others are being denied treatment for a multitude of reasons. It’s embarrassing that I have to rely on learning about this disease and how to treat it through support groups but thank God for every single member of those groups! The symptoms of this disease alone are devastatingly difficult, impacting my life and the lives of those around me. It is difficult to believe that there are treatment options but that my own medical profession cannot help any one of us.” – Jennifer H.S.