The Isolation of Chronic Pain
Doctors can lesson the symptoms of some chronic illness and disabilities, but medical malpractice can create more pain. Mutima and Amairany are just two of the many young women of color whose medical conditions could have improved with competent and individualized preventative care.
“You have to think of my illnesses like CityCorp, it’s like the parent company,” Mutima tells me over the phone. “You never really realize how important every single part of your body is until you no longer have use of it,” Amairany tells me frankly in a separate telephone interview.
Mutima’s body hosts mixed connective tissue disorder, PCOS, gastritis, vertebrobasilar insufficiency, and neuropathy (to name only a few). Amairany lives with bipolar disorder, depression, anxiety, and PTSD, but her diagnosis of complex regional pain syndrome causes the most pain. Whereas Amairany’s chronic pain began in her early twenties, Mutima was already in her late twenties when her doctors formally recognized her chronic pain. Since Mutima was five-years-old she knew something did not feel right, but no one would listen.
Mutima grew up as a middle-class Black girl in D.C., moving to District Heights, Maryland in her early twenties. From a young age, “everything was like a movie” to her. Not because she was particularly imaginative, but because she felt a simultaneous numbness and pain within her body. In other words, nothing seemed real. One time she was playing football on concrete and the boys dropped on her back. She started laughing in lieu feeling any pain. Her nonreaction to the sheer impact lead the boys with whom she was playing to question her sanity. Yet the lack of sensation in much of her body throughout her life did not mean the pain was gone. Her pain was everywhere, but it was invisible. This meant family and friends saw her pain as as nowhere and nonexistent.
After a car accident in 2012 she finally started receiving better medical care and actual diagnoses, but no solutions. Mutima felt vindicated in knowing that she was right, but disappointed that it took this long for anyone — including medical professionals— to believe her. The severity of her injuries meant that she could not walk and needed a caretaker for some time. Her father moved into her home to help. She needs help with tasks like bathing or greasing her scalp because there are days where she can’t even lift her arms. Family members and friends began to disappear well before that. And with her declining health came an increase in manipulative and deceitful behaviors from those closest to her.
Mutima had no safe space. Her father purposely ignored the sight of growing black mold in the humidifier that he refilled daily. She faced years of verbal abuse at her mother’s home. And one of the lowest moments of her life was during a hospital stay where they refused to offer her pain management, denied giving her the necessary daily medications, and purposely wrote misinformation in her file. At the same time her family was borrowing the money she had previously saved while telling friends that Mutima was lying about her illnesses. It did not take long for Mutima to cut all ties to her family.
Amairany grew up in Mexico and Texas with her mother and her brother. Although family is also a sensitive topic, what really shifted her life was a dog bite in 2016. The doctors diagnosed her with complex regional pain syndrome (CRPS) after medical malpractice. Put simply, Amairany describes it as “a chronic pain disorder caused by damage to the nerves.”
Twenty-three years old and uninsured, she hurried to a private clinic to figure out why her hand had swollen to three times its regular size. She received medically necessary emergency surgery and stayed in the hospital for over a week as a result. She came out on the other side with $70,000 in debt and a hand that she could not use for six months. She developed CRPS “due to an infection that wrapped around the nerves of [her] hand” that were damaged once she had surgery. Her CRPS is often visually undetectable, but her hand is sensitive to touch. Physical contact or not, the source of her chronic pain is her hand.
The dog saliva that pierced through her tendon would not have led to CRPS, Amairany states. Had the clinic not let the infection sit untreated for three days and instead tested her correctly she would have recovered much quicker. Over the next six months she attempted to get disability benefits, but got denied. During that time she also dealt with a wrongful termination from her full-time job. In addition, she should have received physical therapy five times a week. But at $100 per session she only went to five in total last year.
She was living in her own apartment before the dog bite, but newfound debt and no benefits meant returning home to a strained relationship with her mother. When doctors tell her she is “too young” for what they call “the suicide illness”, her mother will step in to inquire how that helps Amairany. But her mother can also be unpredictable. “She wants to help me kind of get past [my CRPS]. She kind of pushes me and tells me that I can deal with everything and I’m strong and I just need to be strong and not be so negative.” Yet Amairany’s mother also tells her “you can’t really do that, why would you want to do that” about certain activities, like working full-time again.
As Amairany left her solo apartment to get help at home, her younger brother took over the lease. But he began abusing her again she he inevitably returned. She had moved out of her mother’s house to get away from her brother, but once her lease lapsed he moved back too. “He’s very smart, as most sociopaths are,” she told me on the phone. Continuing, she stated that “if he’s gonna physically hurt me he’ll do it when my mom isn’t there.” And when their mom is there, the only consequence is a “hey guys, knock it off.” In addition to purposefully hitting, punching, or squeezing her hand, he also abuses emotionally through yelling.
The longterm damaging effects of chronic pain is unfortunately accompanied by medical malpractice and familial abuse for Mutima and Amairany. And when only 10% of people seeking a medical malpractice attorney actually find one, what becomes particularly important is telling their stories. For Amairany, she wants to affirm that marginalized groups “get told a lot to push through,” but:
“it’s important to know you don’t have to [push through]; you don’t have to get over it. It’s ok to be seen as vulnerable and weak. Disabilities, mental illness, survivors of abuse: they’re valid and they’re very real. Talk about it, admit it: I’m not ok. I don’t want to get over it and shouldn’t have to get over it.”
For Mutima, her prayer is simple:
“Lord please help me get well so I can go back and kick these people’s asses for what they’re doing to these people.”
Between doctors refusing to give her daily medications to nurses who would force her to do painful tasks because she “looked fine”, Mutima has had it.
Like Mutima and Amairany, consider who you can help, and respectively check in on the people who you think don’t need any help. Sometimes we’re all we got.