‘You’re too young to be so sick.’
I’ve heard this comment from well-meaning friends and doctors alike, and to a large extent I agree with them, but the reality is that I am this sick. And so are many others with Lyme Disease or any number of other chronic diseases.
This experience has definitely opened my eyes to the volume of young people with chronic illness. I dare you to go on Instagram and look under the hashtag #chronicillness. What you’ll find are thousands of posts from (mostly) young people suffering from one disease or another, whether it be Lupus, POTS, CFS, Lyme, or another lesser known illness, yet our society, to a large extent, knows very little about these invisible illnesses.
I know that it can be confusing to outsiders to understand how the life of a person with chronic disease or invisible illness is so marked with pain when on the outside we ‘look normal’. For the record, I think I look anything but normal- I’ve got dark circles around my eyes and bags under them, despite the amount of sleep I get. I’m pale, paler than this Irish girl should be. My calf muscles have atrophied from lack of use. My face has lost it’s fullness and instead is a bit hollow. I’ve lost weight. I don’t think I look very ‘normal’.
But I know what it’s like to look healthy on the outside while feeling terrible on the inside, it just took a while for my exterior to begin to match my interior. I was sick for a long time before I was really debilitated by my illness, I just suffered through it as best I could. I was always a little bit bewildered when a coworker would call in sick because they had a scratchy throat or a headache. That was every day of my life. Deep down I wondered what it must feel like to really feel well, not just my version of it.
This story comes to us from a new, sweet friend of mine named Shannon. Invisible illness has effected her from a very young age and caused her to miss much of her high school years. Personally, I can’t imagine being a high schooler and going through this illness, I was much too bull headed back then to go through an illness like this with even an inkling of grace, and my heart goes out to those who were much younger than me when they became so very ill.
Shannon recently started a blog called Lymeless And Lovely, and I encourage you to check it out if you have a moment, she’s a wonderful writer and has an ease with putting her experience into words, as you’ll see below.
As always, I hope that you enjoy this story and that it brings a deeper understanding of not only Lyme Disease, but of the multitude of other chronic illnesses that are becoming more and more prevalent by the day.
First Name: Shannon
Where do you live? Ottawa, Ontario, Canada
When/Where do you suspect that you contracted Lyme? New Brunswick, Canada
When did you first begin to feel ill or start to notice strange symptoms?
In the summer of 2003, while on vacation in New Brunswick with my family.
What were they?
I developed a weird rash all over my body. It lasted 2 weeks and I felt generally unwell the whole time, but then it disappeared. That fall I was missing a lot of school due to feeling sick which was unusual for me. Then in Feb of 2004 I woke up with what I thought was the stomach flu and I was sick from then on.
How many doctors did you see before reaching an accurate diagnosis?
Oh gosh. I stopped keeping track! So many. Gastroenterologists, cardiologists, GPs, dozens of ER doctors on the several occasions I ended up there. So many haha.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?
The first thing I was diagnosed with was probably social anxiety. I had doctors tell my parents I was just afraid to go back to school (ridiculous because I always loved school and was devastated to be missing it).
I was also diagnosed with a handful of random things that didn’t really explain my symptoms in their entirety, or their severity such as acid reflux and ovarian cysts.
I was finally diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in 2005. At the time, we weren’t aware why I developed POTS (it is usually a secondary condition).
For years we just treated the POTS as best we could, but unfortunately I didn’t notice much improvement in doing this. Finally in 2012 after doing my own research, I got tested for lyme. Between my test results and symptom history I was diagnosed with late stage lyme along with several co-infections.
What are the main symptoms that you experience currently?
My main symptoms are definitely extreme weakness/fatigue and nausea. I black out a lot and sometimes even faint. I also get bad pressure in my head and abdominal pain.
What does your treatment regimen look like?
I’m currently treating with a variety of different herbals and supplements. Herbs to address detox, liver support, kidneys, lyme and co-infections, parasites, and the immune system. I am on binders to help bind the toxins that are released from this process (chlorella and activated charcoal). I am also starting a supplement called CORE that addresses KPU which is an issue a lot of people with lyme have. I take methyl folate and hydroxy b12 as I have the MTHFR gene mutation, and I am also looking into mold toxins and the treatment involved in that.
How much do your symptoms prevent you from living a normal life?
A lot! Up until last year, I was sick but was able to semi function. I could never go to high school full time and couldn’t hold a job, but most days I was able to go out for a couple hours etc. without too much trouble. This last year I’ve been sicker, and have basically been housebound. I was in online courses for nutrition and had to put my schooling on hold because I’m just too sick at the moment. On good days I’m able to go to the grocery store for a bit or to a friend’s house, but on bad days I can’t get out of bed, make own food, or shower without sitting down.
What do you like to do in your free time and how is this different than before you were sick?
Most of my time now is “free time” but unfortunately I’m not feeling well enough to do much with it! Watching movies or tv shows, reading, and when I can, spending time with friends and family. When I was feeling better I really enjoyed baking and cooking, specifically gluten free and allergen free foods!
What do you want people to know about Lyme?
So much! This illness is so misunderstood and I hate that. I was so frustrated by this that I wrote a blog post about this very thing! (Side note from Kayla: This blog post is a MUST read for anyone with Lyme or for those who have loved ones who are struggling with Lyme).
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?
I’ve learned that life is precious and really can change overnight. I’ve learned that unfortunately a lot of the time the people you think will love you unconditionally won’t, but the ones that do make up for it. I’ve learned that it’s the little things in life that hold true value, and I’ve learned to practice gratitude in every way possible, no matter how impossible it can feel at times. I’ve learned that it’s okay to have days where you don’t feel positive or hopeful. And it’s okay to want to give up and it’s okay to cry. We are human. I’ve learned that nothing is permanent. And most of all I’ve learned that those that have experienced suffering and loss also have the greatest ability to show true compassion, empathy, patience and kindness.