The Mighty Logo

20 Things People Don't Realize You're Doing Because You Have Lyme Disease

The most helpful emails in health
Browse our free newsletters

When you have a chronic illness, you often develop habits to make it through each day. However, if this disease is invisible, like Lyme disease, it can make it difficult for others to understand why you do the things you do.

Lyme disease is a vector-borne bacterial infection that can affect nearly every aspect of the body. Since Lyme can cause so many different symptoms, those living with it have to learn how to cope and make it through their days. For me, I often have to wear sunglasses indoors because the light sensitivity is too much — people often think I am hungover, but in reality, I am just trying to get through the work day without my eyes burning. It is hard when others don’t understand what you are going through or why you are acting a certain way.

That is why we asked our Mighty community for some things people don’t realize they are doing because they have Lyme. People don’t always know what is going on in someone else’s body. So maybe the next time you have to wear your pajamas to the grocery store, or your sunglasses inside, others will be more accepting and understanding of what you are going through.

Here is what our community shared with us:

  1. “I can relate to using all my energy to look and act OK in public and so I can have short conversations. Then I go sit and just collapse and sometimes start crying because that little bit exhausted me. I also constantly force myself to say ‘good’ or ‘OK’ when someone asks ‘how are you?’ and I worry all the time that I talk too much about my illnesses but it’s hard not to sometimes because it’s so much of what I think about. How to survive my pain, my brain fog, debilitating fatigue, rapid heart rate, whether I can walk from the car into my son’s school to get him… It controls everything.” – Angel L.
  2. “Sit down randomly a lot cause I get extreme dizziness. Have little energy and mood swings.” – Steph D.
  3. “Choosing clothing based on how bad my pain level and sensory issues are that day. If I’m in a cotton dress and leggings, I’m probably having a rough day. If I’m in cute jeans or pants, it’s probably a better day. If I’m out in public in my loose fitting PJ pants, please don’t touch me today.” – Jaimie L.
  4. “I fixate on a game on my phone so I think less about how much I’m hurting. I think it bothers people at family parties but I so badly want to be there and this is one way to help it happen. I hope they know how much I enjoy hearing their voices and feeling them around me even if my nose is kind of buried in my phone when it all gets to be too much.” – Sarah S.
  5. “Smile. Drop things. Twitches/muscle spasms. Memory loss. Fall due to joints giving out randomly. Cry and go nonverbal for no reason. Mood swings/anger. Sleep.” – Amber L.
  6. “Compensate in other ways to conserve energy… for instance delegating only a certain amount of time towards an event or activity because you don’t want to drain your limited amount of energy due to fatigue. I used to run myself into the ground before placing boundaries. My fatigue is a dark black cloud… if I can keep it partly cloudy on most days I am doing pretty well but I dream of full sunny days with energy that is endless.” – Amy B.
  7. “I have to have my groceries delivered. Not as a luxury, but because going to the grocery store exhausts me and also exposes me to environmental stressors like bright neon lighting and strong chemical odors emitted from the cleaning products aisle. The stress of searching for products, interacting with other customers, waiting in the checkout line and navigating the parking lot can leave me drained for the rest of the day. Sometimes, I can go for stretches of time when I’m simply not well enough to leave my home and without grocery delivery, I would run out of food.” – Milena L.
  8. “In large groups be quiet as I may not be able to find the correct words for my sentence!” – Tammy A.
  9. “I hide pain really, really well. Migraine, throwing up? I’m fine. Off to ski with the kids on our winter vacation. Horrible joint pain? I still get dinner on the table and the laundry done. I have pain medication and without it I could not function. I smile through the pain and keep going. No one really knows how bad it really is.” – Jennifer B.
  10. “I schedule everything basically to the minute. From what parts of my house I clean that day, to what errands get run each day/week, and what projects I work on at work. Everyone thinks it’s my OCD that makes me do this, but it’s so I know I’m not needing to do too much on one day. I spread the overly physically and mentally exhausting tasks out so that I’m able to complete them all. That’s the idea, at least! Those bad days really throw a wrench in the plans sometimes.” – Natalie B.
  11. “Saying the opposite of what I meant to say.” – Sandy M.
  12.  “Rest during the day. Get lost in places I’ve been to 100 times.” – Linda F.
  13. “I’ll catch myself biting my cheeks and holding my breath because the pain is so [bad].” – Jennifer F.
  14. “Forgot that I have done something or said something prior.” – Princess J.
  15. “I avoid driving when I’m neurologically not OK to drive. It has nothing to do with not wanting to go. It’s because my symptoms make it risky to drive.” – Melissa B.
  16. “I set my alarm two hours earlier than I actually need to wake up because it takes me that long to get out of bed now. And even if I get out of bed right away, I use that time to try to re-remember all of the things I was supposed to do and forgot to do already within the first two hours of my day…” – Hailey F.
  17. “I have quit telling people that I have Lyme disease and pretend that I’m just fine. But I’m not fine. I have had too many experiences where people act all paranoid and treat me like they are going to catch the disease from me just because I mentioned that I have it. It further isolates me inside this pain-filled prison that I’m trapped in.” – Tonya W.
  18.  “Spending my days off recovering from everything else I’ve done in the week. Especially work days. Occasionally I’ll have energy to socialize in between.” – Sarah Y.
  19. “I push and crash. I have a good day so I do as much as I can but then end up being worse off.” – Susan D.
  20. “Pretend that I’m OK when I’m in public, even though I’m not. It’s almost like wearing a mask, because people never really want to hear when I’m feeling sick anymore. It’s like there is a time limit for how long someone can have an illness.” – Shelby C.

You never know what someone else is going through. If you have ever had to do any of these things to make it through your day due to your Lyme disease, know that we see you and you are not alone.

Originally published: February 21, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home