I think all of us who suffer with Lyme have probably encountered more people than we can count who, when we tell them we have been diagnosed with chronic Lyme disease (or any variation of the phrase), reply, “Oh, isn’t that that thing that ticks have?” Which is a statement with good intentions but sometimes it can get frustrating because we want to just scream “Yes, but it’s SO MUCH MORE than just a little illness ticks carry that can be easily identified and easily treated and it’s a really big deal!”
Of course we rarely, if ever, find ourselves in a situation appropriate to scream such a statement, either for fear of offending the person we’re talking to or making a scene or any other reason. Instead we, or at least I know I, often find we try to wrack our brains and come up with a detailed-yet-still-concise explanation for exactly how serious this illness is and how greatly it affects our ability to live the life we used to live and how hard simple daily tasks can be, especially when compounded with the seemingly new symptoms every day, courtesy of Lyme and Co.
But this is the hard part–we often have done enough research and reading and networking and digging into any and every resource we can that it can seem quite impossible to sum up the disease in a few sentences. Not only that, but with our often-impaired Lyme brain function, a lot of the time we find it very difficult to put a sentence together to get across our intended meaning. Anyone with me here? I know it’s very frustrating for me–one of my ALL-TIME favorite things to do is public speaking. I absolutely LOVE public speaking! So to not even be able to really string together a sentence or two when I’m talking one on one with somebody is super, super frustrating for me, and sometimes I get so irritated at my brain’s inability to form a coherent thought that I automatically revert back to one of the “saved files” in the Lyme filing cabinet in my brain and give a rehearsed answer anytime I’m asked, “Well how are you feeling?” or “What can you do about it?” or “Why did it take them so long to figure out what’s wrong with you?” Because sometimes it’s easier just to give that rehearsed answer than to attempt to explain exactly what we go through daily.
Anyone reading this who is a friend/family member/other support person for anyone suffering with Lyme and co, and particularly if you are someone who is one of the above listed support people for me, please know that if I do ever give you an answer like, “I’m fine” or any variation of that phrase, even if you know or can tell that I’m not feeling so fine or well, know that it has absolutely nothing to do with you or anything you’ve done–so please don’t take offense–it sometimes just isn’t worth the extra effort to explain in detail because surely enough, more often than not, after I try to thoroughly explain something, my entire store of brain power will be gone for the day (or 2 days, or more), and there are times when it’s not worth that loss of brain energy to try to explain something with the elaboration it deserves.
But rest assured, if I’m having a particularly good day, I might just talk your ear off….for a while, anyway! I’m asking you all to stick with me, and to please have patience with me as I continue along this journey. It’s a long road but I’m suited up in the armor of God and the devil is not going to win this one! (I’m adding one piece of armor, though, and it will be my DEET-free,, super strength tick repellent!)