Lyme Disease Support by Ben's Friends

React! Share your thoughts

How has your life been affected by a disability? (Yours or someone else’s.)

What experiences have you had with disability issues? What can you add to the author’s do/don’t suggestions?

Share your thoughts with your fellow members!

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The fact I can no longer articulate my thoughts during a spoken conversation has become extremely frustrating (both in person or on the phone). Over time I have learned to accept my seemingly “invisible” disability. I have learned it helps to mention to others “I am struggling with chronic lyme” when the word-finding or memory lapses begin to cause me anxiety. It took me over a year to be able to openly share these mental challenges, as well as to accept them myself.

Sharing my “hidden” condition is becoming easier. For the most part, people are kind and thankfully do not look down on or pity me. Often they immediately share a story of a struggle someone they know is having with lyme. (Just my luck that the “great imitator” in my case has not only caused physical but also mental handicaps).

I used to try and “cover” by pretending I could understand others… and would quickly switch topics when I forgot names, places or words. (Did I mention I was formerly a teacher?) For all the effort this took it still astounds me how I was perceived by students, colleagues and members of my own family…(they were unkind and viewed me as incompetent, high-strung, impatient, selfish and bossy). The effort to be “normal” was also killing me slowly from the inside. How ironic that no one could “see”! Living with any disease can do that when no one knows of your struggle… and everyone, including yourself, ignores your pain.

Now I realize how important it is to find help from the medical community if one experiences personality changes, cannot sleep, loses faith, becomes anxious, or cannot cope with daily tasks. Personally, I had morphed into a person I did not want to be. My self confidence was shot, and as I pushed through pain and fog day after day the effort became excruciating to myself and adversely affected others.

I am writing this to thank those who take the time to listen patiently, repeat information or slow down a bit when someone like me seems anxious.

I also hope, that by sharing my challenges openly, anyone reading this might support family members or colleagues who seem like a ghost of their former selves.