Have you ever felt alone on your Lyme journey? Have you ever felt confused and helpless? That used to be me. Hi everyone, I’m Rachael and Jenna has graciously allowed me to share my story (and a new resource) with you today.
I’m 19 and have likely had Lyme for about 11 years. I remember when my parents burnt a tick off the top of my head when I was about 8 years old, a traumatic enough experience to etch the memory into my mind. Even though ticks were all around me, I never knew about Chronic Lyme. If I had, things might have been different.
The pain and fatigue really started when I was about 14 and by the time I was 16 I was diagnosed with Chronic Pain. Chronic pain was the only name that the Doctors had for the unexplainable, unrelenting pain in my shins, back, and neck that sometimes jumped to my knees, ankles, shoulders and elbows. I was sent to a Chronic Pain Rehabilitation course where they taught me to hide my pain from the world, never mention it, and told me to get on with my life. And I did, for a while at least.
I started college at 16 thanks to a program in my state and decided since I didn’t have sports anymore, I was going to move off to college a year early (for what was technically my senior year of High school). I was driven and focused and kept pushing myself harder and harder as time went on, frustrated that I seemed to add symptoms without warning.
One day I woke up, unable to put pressure on one ankle because of searing pain. Suddenly my digestive system staged a complete mutiny and it took almost a year of experimentation to learn that I am intolerant/sensitive to gluten, corn, potato, dairy, yeast, sugar, and artificial colors.
Then yeast issues took over and to control them I still have to adhere to a sugar, yeast, fruit, and grain free diet. Fatigue would leave me confined to my bed every moment that I was not required to be in class. There were so many more symptoms that I don’t even have time to list, enough that I should have stopped, should have slowed down, or should have at least seen the signs.
But still, I pushed myself harder and harder trying to live “normally” again. Finally my body gave out.
I was mentally, physically, and emotionally a wreck. I left what would have been my freshman year of College after only a week and went home to try to sort through the mess that was my body. It was then that I really felt the isolation and lost so many friends. My situation was already difficult, but with no friends to lean on for support, it started seeming hopeless too.
Soon after coming home I was diagnosed with Fibromyalgia and Chronic Fatigue but without any treatment plan, my situation didn’t seem improved. 9 months later, after countless tears and struggles, we found out about Lyme. No one had ever mentioned it before, it was my mother’s intuition, God’s grace, and a chiropractor all working together to bring the pieces together. That was March of 2011, just a few short months ago.
Since Lyme came into the picture my life has turned around and around and around again. I found a LLMD, started treating viral co-infections and am finally starting to feel like a human again. I Herx violently with the best of them but right now, I am slowly improving. I take 80 pills a day and have an entire kitchen cabinet devoted to pill bottles but I am hopeful that one day I won’t need all of that.
The hardest part of having Lyme as a young person (besides the physical symptoms, of course) is the isolation that it brings.
While my peers are shopping for a new outfit for the next party, I’m shopping around to save a few bucks on my next prescription. While they do shots of alcohol, I take shots of herbal concoctions alongside handfuls of pills. But finally, I don’t feel alone. I found a place where I fit in, where people understand, where they care, and where I can just be a teen/young adult again. It’s called HealKick.
HealKick is the first social network for young people in their 20’s and 30’s with neuro-immune illnesses. There are many members with chronic Lyme but also represented are Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Myalgic Encephalomyelitis, Lupus, Rheumatoid arthritis, Sarcoidosis, Multiple Chemical Sensitivity, and Mold-related Illness.
It’s an incredible site with all the features of a social network. You can chat with other members, post updates, participate in discussion forums, and post pictures. You can even search the member map for others in your area, choose the language of the site, and earn points for rewards by being active on the site.
HealKick is unique because it brings together people with similar illnesses who are also in the same stage of life. Most support groups are condition specific. HealKick allows you to learn from others in a similar but not identical situation while uniting all through the common age group.
Recently I found out that I will most likely not be well enough to attend school this fall. Do you know who was there for me? Not my friends from High school or College, but my friends from HealKick. They were there for me not because they felt sorry for me, but because they understood exactly what I was going through and most importantly, they cared about me. It was one of the most comforting moments I have ever experienced. Of course, my family was supportive and caring as well but sometimes as a young person the emotional support is so much more meaningful when it comes from peers.
I know firsthand just how isolating and discouraging Lyme and other neuro-immune illnesses can be, but they don’t have to be. There is support available and people who care. If you are between the ages of 18 and 40 and are chronically ill, please come join us at HealKick. I can’t wait to meet you! If you aren’t in the demographic, please spread the word to anyone you know who is.