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15 Photos That Show What Lyme Disease Really Looks Like

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Many would call Lyme disease an “invisible illness,” and it’s true that people unfamiliar with the disease may not “see” all your symptoms (especially since not everyone gets the bullseye rash). But to anyone really paying attention, the challenges and physical pain Lyme disease brings to your daily life are clear. Lyme disease is pain, it’s fatigue, it’s plans canceled and hours spent in doctors’ office trying to diagnose and then treat this often devastating illness.

We asked our Mighty community to share a photo of what their Lyme disease looks like, to shed light on the reality of daily life with the condition. When we look at these photos, we see the struggle Lyme warriors go through — and we also see their strength to keep fighting for their health, even in the face of incredible obstacles.

Here’s what our community shared with us:

1. “This is me with my service dog Sonoma taking care of me during a seizure. Lyme disease stopped me from dancing as a preprofessional ballet dancer but has educated me so much in medicine and has made me a huge advocate for Lyme disease and want to pursue a career as a physician’s assistant. In this picture I was unconscious and didn’t know where I was, and I woke up confused, sad, unable to talk, and walk. Seizures make me feel very isolated, but Sonoma is helping me stay safe and snuffle me to make me feel better.”

girl lying on floor with dog snuggling her

2. “This is me in the hospital. I was there for reasons other than Lyme and had been admitted for a few days when this was taken. The hospital told me they had, ‘no protocol for ticks’ when it was noticed, so it was left in my arm for two days. This is likely when I got Lyme disease. This is me shocked that it was still in my arm, very alive. I couldn’t reach it to remove it myself and thought I had nothing to worry about since my trusted hospital wasn’t overly concerned. If I had only known where I would be now.”

girl raising arm to show tick bite

3. “My symptoms look invisible… Heart palpitations, panic attacks, eye sight floaters, muscle fatigue, fatigue, tense muscles, muscle twitching, sleep was non-existent, brain/mental fog, hyperthyroid, hormones imbalanced, nauseous, severe anxiety, breathing was shallow, chest pain/pressure, minor tremors, couldn’t eat, pressure in my eyes, headache, migraines and many other symptoms. I never had a scar from the tick bite. I don’t even recall getting bit but I do remember having a tick on me.”

woman showing green ribbon bracelet

4. “Lyme disease looks like there is absolutely nothing wrong with the person because it has no boundaries when it comes to whom it will take over… In this photo I am undergoing ozone therapy followed by IV antibiotics four days a week. But if you asked me how I was feeling I’d tell you I am happy. Lyme disease looks like many things, but most of the time people wouldn’t say ‘happy.’”

woman sitting in chair with iv in arm

5. “It was where my dogs and I love to go camping when a tick found my back. I had no idea until a few days later and it felt like I had scratched my back on something. I asked a friend to look. The tick was removed and so was my life as I knew it. I don’t allow it to scare me away from the nature I love. I don’t hike for miles and hours into the mountains anymore. I stay close to the car just in case I get too sick.”

wooded area with creek and dog

6. “I try to live a normal life for my kids. I’m smiling in this picture of myself with my daughter at her dance competition. What it doesn’t show are the moments I went back to the hotel and laid down in bed. I wasn’t going to miss my daughter’s performances. My dance mom family were wonderful at helping me through these moments.”

mom with arm around young daughter

7. “Lyme disease has caused me to have heart issues, hypothyroidism and hypertension (my blood pressure rises over 200 above 175 — extremely dangerous). This was my zillionth Holter monitor. My skin breaks out in cuts, bruises and rashes where the stickers are, too.”

woman wearing monitors on her chest and stomach

8. “This is my bed, I’m currently not in it, but I’m there 80 percent of my life. The aching, shooting, stabbing, itching, and burning pains flare, the nausea is too much. So I stay in bed. I get out of bed to eat, go to the bathroom and sometimes a small trip out of the house. Lyme disease looks like being bed ridden, it looks like you’re crying in pain, but sometimes to others it doesn’t look like anything at all.”

bed covered in blankets

9. “This was during a painful spasm/convulsion episode I had that lasted around 30 minutes. During these episodes, my muscles will spasm, twitch, and lock up. It can be incredibly painful and make me unable to function. This episode was the first time it lasted that long so not only was I in a lot of pain, but I was terrified because I didn’t think it was ever going to stop… I debated whether or not to post a picture like this or one of myself looking ‘normal’ because while I may look like I’m completely fine on the outside, there is havoc on the inside. Pain is constant but it differs from one area to the next even though it is always there. Just because I can post on social media or text or even see you in person, it doesn’t mean I am fine.”

woman lying on couch crying

10. “Lyme disease is having to constantly pull out your inner fight in order to survive. This photo was after emergency surgery and I collected all the courage I had within me in order to get through it stronger than before, which is exactly the way my fight with Lyme disease has had to be.”

woman in hospital bed smiling

11. “This was me and my daughter at Disneyland. It was a beautiful time with my kids but even with my smile I can see the pain in my eyes and face. I was in much pain and bad fatigue. Lyme disease does not care if I’m on holiday… There never is a vacation from the pain, fatigue and horrible symptoms I deal with.”

woman sitting with young daughter on lap

12.Trying to stay as normal as possible for my kids. The dad they have now can’t do nearly as much as the dad they had two years ago.”

man sitting with two young daughters

13. “I’m on the floor not being able to walk because my legs were in so much pain and had not slept at this point going on four days.”

woman lying down wearing green hat

14. “Lyme disease looks like years of unnecessary tests and procedures until you find someone who will believe you.”

woman with monitors and wires on her face

15. “Lyme disease is never knowing what your body is going to do, or even look like, next.”

girl showing red marks on her face

Originally published: May 15, 2017
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