I have stories

I don’t have anecdotes to tell at parties

I don’t have funny stories about one night stands or crazy nights out in college

Maybe I do but I think you remember them differently than I do

I think mine are seen through a different lens now that they’re over

I have some stories that you aren’t supposed to tell people

The stories that your parents don’t tell your relatives

The stories that are only on the pages of legal documents and psych evals

The stories that line up with prescription records

The stories that are in the results of blood tests

The stories that only are funny when you’re in company that understands you fully and completely

The stories you forget until they are stirred up again

The stories that you didn’t feel the first time so they traumatize you in their catharthis

I have stories, you just don’t want to hear them

No, I don’t want to tell them

But maybe next time

How people describe this 22-year-old with Lyme

TW: psych diagnoses, mention of suicide


"Adjusting" instead of going through a cycle of real disease

“Homebody” instead of tired, fatigued, unable to get the energy to leave the house

“Spacy” instead of as forgetful and confused as an early Alzheimer’s patient with the blank stare of a dissociative psych patient

“Mean” instead of emotionally numb, irritable, and unable to sympathize when feeling so terrible

“Distant” instead of emotionally unable to speak to people who have not been supportive of me or have been negative to my healing process

“Addict” instead of someone who abuses substances to cope with emotional and physical pain

“Bi-polar” instead of depressed with irritable periods where you can leave your room and think clearly

“Crazy” instead of undiagnosed and misdiagnosed, treated for the wrong disorder/disease

“Felon” instead of a person who is numb and is pushed to do something that will cause an emotional response with a pattern of irrational behavior because their mind is being taken over by bacterial infection and inflammation

“Undergraduate” instead of person who has taken the last four years to learn meaning to combat suicidal thoughts and keep themselves alive this long

“Major depressive disorder with psychotic features, dysthymic disorder, cannabis and alcohol abuse, nicotine dependence, low self esteem, poor coping skills, poor interpersonal skills, with "excessive religiosity" and "pseudo-philosophical preoccupation" (11/8/11- Princeton House- my actual first diagnosis)- instead of a person put into the psychiatric system when their problem is caused by a bacteria trying to cope with their circumstances, new diagnoses, and utter despair

What people don’t believe a 22-year-old female can be: really sick, disabled by a bacterial infection that can cause systemic problems in the brain, muscles, organs, and joints and can affect almost every system of the body, affect mood, hormones, digestion, and memory, AND is invisible to anyone who doesn’t ask

But a 22-year-old female can only be “crazy" and "adjusting" because she is too young to be sick.