When People Think Your Lyme Disease Illness Isn't Real

What It’s Like When People Don’t Think Your Illness Is Real

Liz Ramos

A few weeks ago, I attended a wedding and had the entire day to get ready. That day was not a good pain day, per se, because lately I have not had any good days. But it was a break from the unending pain I had endured the week prior.

I took my time, enjoyed feeling like a normal person for a while, because most days I barely have the strength to blow dry my hair. I used to be a shower every day type of girl, but now even showers are exhausting and the thought of having to do my makeup can cause major stress and anxiety, so makeup-free is now my jam.

When I posted the pictures from that wedding, I got so many comments about how good I looked, and even some mentioning that I looked healthier than I have in a while. Although I’m so thankful to get compliments from my peers and family, remarks about what I look like tend to be hard for me to take as well, especially when I know that social media can be so misleading.

I want to show that not every day is a bad day for me, and I am not defined by this illness, but how do I balance that with the fear that people who are reading will think I’m feeling better when I’m actually feeling worse? How do I portray a realistic image that every day I am in pain, every day I am struggling, but some days I decide doing things I love is more important than the recovery it takes?

Having Lyme disease and co-infections seems to compound this issue because it is so misunderstood in our world today. Most of the general public has not heard the truth that chronic Lyme can be deadly, and the CDC continues to say the disease I live with every day is not real. It’s hard enough to be sick and feel like I have lost most everything I used to be able to do, to think, to live a normal life. You add to that the anxiety that comes from knowing people out there would say I am making this up, and that can lead me into a dark trail in my brain where fear and panic take over the positivity I fight so hard to maintain.

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I chronicle my journey with Lyme on social media because I know there are others out there in the same position I was in before I was diagnosed. They could have symptoms without realizing Lyme is causing them, or haven’t seen doctors that are willing to even entertain the idea and test for it (not to mention that if they are willing to look for it, many of the tests are often inaccurate, which is absurd).

I want to be an advocate, an unwavering voice that speaks truth when it seems our medical profession continues to turn their back on the hundreds of thousands of us struggling.

Yet each day when I think about what to post, I worry. I think about what the post says about my journey, and if it adequately shows what I am going through. Does it sugarcoat this illness, or am I not sharing enough of how much pain I am in and how much I am struggling emotionally?

The problem with social media as a chronic illness warrior is that too often we are seen only for the good pictures we take, but what is not seen is the amount of pain we are in at the moment and the pain we endure after. Makeup and a smile goes a long way to make us look like we have it all together, when inside we may feel like everything is exploding and the noise is so loud and we just want to be home but actually what we really want most is to be back to who we were before.

My heart breaks for all the people who regularly hear they don’t look sick enough. Hear me: you are seen, you are loved, and you are believed. For every person out there who says what you’re going through isn’t real, you have 10 more in this world who will gladly take your hand and walk with you through this hell.

Most of the time, people just don’t understand until they get it themselves, and I know I wouldn’t wish this on anyone. I’m learning compassion for those who are quick to judge (and also realizing I can be in this category as well), and also re-learning to be empathetic for those in pain that in my hard moments I selfishly view as less than mine. No one’s pain can be compared because it is so relative to our individual life circumstances and where we are at as humans in this walk of life.

I’m not going to stop sharing my journey, and I’m keeping up with sharing the good days and the bad ones. My life might be really hard, but a picture of me with a smile reminds me I’m still me, that the rambunctious and outgoing self I miss so much is still in there. She’s not gone forever, she’s just being molded and refined and will come out of this better than she was.

I’m learning to love, and with being a voice comes criticism. We hold our heads high as warriors and step forward into each day knowing the pain will still be there, but it can’t steal our joy!

Originally published on The Mighty