Some people like to take naps and lounge. I often wish I were like them! It would be nice to be able to focus on a Netflix marathon without getting the itch to go do something else. It would be great to be free of thinking of the next thing I would like to be doing.
So, to feel a little less alone, I turned to online support groups.
On Facebook, there are hundreds of groups for those suffering from chronic illnesses. I joined the groups and started reading about others’ experiences. Members of these groups got me. They could relate to what I was going through. While our symptoms may have been different, our experiences often looked similar. We each were facing some level of debilitation. Chronic illness was changing our lives.
After a while, though, being part of Facebook support groups began to grow draining. I’d see posts pop up in my newsfeed when I was just trying to think about other things. Sometimes, the discussions would bring down my mood. What, at first, was a place of support seemed to turn into a place that drug me down.
I thought about leaving all of the groups. I thought about not talking about illness anymore and just avoiding the subject altogether. But, still, I felt this sense of calling from God to connect with others who are suffering to help bring a little hope. It didn’t make sense for me to completely leave the groups when I desired to help encourage others. It was also good for me to keep learning about what others do for treatment so I can make educated decisions when talking with my doctor.
If your health is in a place where you think it’s possible you have Lyme Disease, I am really sorry. This disease can be incredibly difficult to endure, and I wish you weren’t experiencing symptoms. Please know that you are not alone in this.
(I want to preface this post by explaining that I am not a doctor and am not able to diagnose, prescribe a treatment plan, or give medical advice. The purpose of this post is to share insight gained from my own experiences.)
When I first realized that the symptoms I was experiencing could be Lyme Disease, I did a lot of research to determine the best course of action to take, but it wasn’t easy to find accurate information. There were conflicting opinions everywhere.
Often times, even if symptoms would suggest Lyme as a possible culprit, doctors don’t seem to recommend testing. I’ve seen stories of hundreds of people in Lyme Disease support groups who went to their doctors with a whole list of symptoms, but never did their doctors mention Lyme as a possible culprit.
At least once a week I get an email from someone who has stumbled upon the blog and thinks they may have Chronic Lyme Disease. They aren’t sure what to do for testing or treatment. Their doctors either have treated them with two weeks of antibiotics and said they were cured, or they were never even checked for Lyme in the first place. Now these people are at a place of being debilitatingly ill and unsure of what to do next.
Dealing with a chronic illness that most people don’t understand can be isolating. It is discouraging when we can no longer live “normal” lives but everyone else we
know seems to be living life as usual.
It gets even more sad when the people who should be closest to us, like family, seem to disregard the pain we’re experiencing.
For me, living with Lyme Disease is complicated because of the misinformation out there about the disease. There’s a big difference between early diagnosed and chronic infections. Like others with different chronic illnesses, Lyme Disease patients often need to try many different treatment protocols before they find something that works. Symptoms come and go, and pain migrates. It’s hard to explain how you’re doing when things can change drastically in a short period of time.
It’s easy to be a person on the outside, making assumptions. I get it. I’ve been there and am still there to some extent. We see what’s in front of us and formulate our beliefs based on our observations. It makes logical sense.However, when we judge the surface without understanding what’s going on inside, we fail to grasp the full picture.
EVERY. SINGLE. DAY. I have other people make observations about how I look and then formulate opinions about how I must feel.
They then go on to tell me how I must be feeling based on my appearance. Some days, they are correct, but a majority of the time my outer shell doesn’t begin to express the pain beneath it.
Because I truly believe that most people are well-meaning, I try to brush it off. But, it’s not that simple. The neurological symptoms of Lyme have left me with crippling anxiety and depression. I get so anxious about what other people will think that I sometimes lie to myself and to them; I tell them I’m feeling well because those are the words they already put in my mouth. I submit to their opinions because I don’t want to be judged for still being sick.
This eats me up inside as I face other guilt because as a person of faith, I believe in honesty. I don’t want to pretend, but it feels like those around me want to put me into a box — a box I cannot seem to escape.