So how do you explain Lyme disease to someone who thinks you “look fine”?
“Imagine the worst flu you ever had. Then, imagine not sleeping for 3 days straight. Then imagine how it feels when you have something on the tip of your tongue, but you can’t remember it for the life of you.….”
So what does “sick” look like anyway? Hair falling out? Swooning on the sofa? Grey clammy skin? Unable to stand up? Most chronically ill people (including a lot of cancer patients, those with heart disease, etc and other “respected” diseases can look perfectly fine). There are those of us Lymies who do suffer from the above mentioned symptoms…these, and far worse. However for the functioning or semi-functioning Lymie not looking like you are suffering while you are suffering on the inside can be a challenge. To everyone around you you might sound like a broken record and people can get weary of the “unending troubles”.
To those of you who know Lyme sufferers; trust us folks we are weary too! We grow tired of how we must sound to you every time you ask us how we are doing. We hate that question because the answer usually involves the high points and low points of our day (which can change radically), one symptom being better while another one is worse… We know how we sound, we are much more tired of talking about our suffering than you are of hearing about it.
Also know that you are statistically more likely see us when we are at our best, and those times when we “disappear” off the face of the earth for days, weeks or months at a time are the times when we more than likely are in fact swooned on the couch (tv remote in hand).
Please understand how lonely and isolating this life is for us. ( https://jeanvieve7.wordpress.com/2013/07/15/the-emotions-of-an-invisible-illness/ ) The toll it takes on us not just physically but mentally and emotionally. Some of us feel that we have even lost our humanity and who we are as people, and we want nothing more than to get back to real life.
Trust us, this isn’t fun and we don’t want to be coddled or get undue attention, only understanding and (hope of all hopes) a cure.
Thanks for listening.