To read part one of this story, click here.
Morgan is a young woman in her early twenties who has been living with symptoms of extreme pain on a daily basis for the last eleven years. She describes her bad days as lying in bed in a fetal position crying. Bad days can range from happening every day of the week to as few as twice a week.
Her good days look more like those who function without pain: she is able to get her daily projects accomplished. Only Morgan still has the pain and knowledge that if she moves too much, she will end up in bed with a bad day on her hands. She does take pain medication, but it doesn’t help her much. Massages give a bit of extra relief.
Morgan has beautiful, long dark hair and coal-colored eyes. She drives a hot red car and walks with grace and style. Her avid enthusiasm for makeup, decoration, and costuming herself and others in cosplay leaves a listener exhausted by her energetic descriptions.
Alas, she cannot work typical job hours due to pain numbing her back and legs, resulting in days where leaving bed is difficult. Because she appears able-bodied when out in public, asking for help has been a daunting task since she was a teenager. She feels she is one of the lucky ones because she has a doctor who believes and listens to her and has been working to help her figure out the best way to continue her life.
Morgan has been living like this for eleven years, and only in the last two years has she received the diagnosis of adenomyosis, which is an illness wherein uterine lining grows in her muscles. One in ten women is estimated to live with adenomyosis symptoms.
“I get very lonely, but I’m in too much pain to actually get up a lot of the time. My friends only see me on ‘good days’ and I’ve gotten good at faking it.” — Morgan
Regarding living as an adult with an invisible illness, she says, “I feel a lot of pressure to ‘perform,’ to be a ‘useful human’. I feel like a lot of times our world really doesn’t value people who aren’t ‘useful,’ which makes no sense. I’ve been trying to learn that I can be useful, when I have an invisible illness, and that it doesn’t change my value.”
She goes on to further discuss people’s expectations on usefulness: “People expect and want adults to have their ‘life together’ and it’s harder to ask for help as an adult…I pass out from pain sometimes…I really try hard not to let anyone see: to help myself, instead of accepting help. [I don’t want] to be a ‘burden.’ As a kid, I guess we’re dependent anyway. I didn’t have this as a young child, just a teen, and I didn’t tell anyone what was going on [right away].”
When asked about finally telling a doctor about her symptoms, Morgan replies, “We’re the ones with illnesses that need other’s help, but instead we change for what we think they’ll be thinking…and I find at least in my case, I’m usually wrong. People are kind, and do want to help.”
Morgan often makes her illness sound less difficult to manage so no one feels obligated to help her – including, at times, her doctors. She struggles with others, even those in the medical profession, thinking that her symptoms and experiences are only in her mind.
To be continued in one more part.
