Non-Apparent Disabilities
Written by Kari Havenaar, MA
This writing is based on an Interview with Kelly Meadows and Kari Havenaar.
Imagine you’re in a crowded room and nobody can see you, you’re at a house party and nobody acknowledges you, you’re at the shopping center and you are begging to check out your items, and no matter how much you want to be seen you can’t be. This is a chronic illness; everyone says, “You look able-bodied,” or “Why can’t you just go get a job,” and the hurtful words and language start hitting you all at once. Inside you’re in so much pain you contemplate your existence each day; your physical health starts affecting your relationships, schooling, career goals, which then transcribe to your mental health and who you are. You go to the doctor and you are told to take some ibuprofen for the pain and to soak your feet in hot water and “Maybe that will do the trick,” but what the doctors and health professionals don’t realize is that they directly contribute to this invisibility of chronic illnesses and why some community members don’t ask for help.
Most 17 or 18 years olds are encouraged to go to school or to find a job and get to work. Kelly decided, along the path of ten years, that she wanted to do both; she dabbled in cosmetology school, went to school for medical coding, got certified to read heart monitors, and landed in retail. Within 6 months of hire, she advanced her way to managing a multimillion-dollar store. Symptoms started to appear, and doctors continued to dismiss the pain telling Kelly she should soak her feet in hot water even though her toes were red and swollen and nails were lifting from the nailbeds. Her doctors told her they didn’t have anything further to do for her, or they don’t know how to help; this is the beginning of Kellys story. Her doctors sent her to the University of Michigan where she was diagnosed with Psoriatic Arthritis, where her joints were swollen, and body aches were forever present. Psoriatic Arthritis is genetic, however, nobody in Kellys’ family has it or has ever showed symptoms. After what felt like a lifetime of trying to figure out her health, Kelly began drug therapies to treat her arthritis. At the beginning of this journey, with a new diagnosis, practitioners advised to try the cheaper and more affordable drugs to treat the symptoms. After countless trials and errors, immunosuppressants were finally an option and seemed to be the most helpful. The only downfall of immunosuppressants is that over time your body builds immunity, and they just suddenly stop working. When they stopped working, Kelly ended up in the hospital for 4 days because of an unexpected flare up. She started to swell up and quickly couldn’t walk; her daughter took her to the hospital in a wheelchair. The arthritis is all over Kelly’s body, but it is unknown when the next flare can surface. Kelly states that “Managing a disability is like a part-time job, you have to manage chronic conditions, or they will manage you … my body tells me when I need rest. I will ache all over and get chills and it feels like I am coming down with something. That is when I take time to rest and recover.”
Image Description: Kelly Meadows is wearing a floral blue and white shirt and has blonde hair. Kelly has fair skin and is wearing light makeup. The background is brown and black. Kelly is facing directly toward to photographer and smiling.
In 2011, Kelly was doing nursing facility transition services when she contracted Tuberculosis. She didn’t show signs of TB, but it showed in preventative blood work done by her doctor. TB is spread directly from the lungs when you cough or sneeze. She was the first person to receive a 4-day TB treatment at University of Michigan Hospital. The medication surrounds the disease in the body to where it will remain dormant. In getting Tuberculosis while being immunosuppressed, her fear was similar to the fear experienced by many at the onsite of the COVID-19 pandemic. When the COVID-19 pandemic hit, many panicked, and for Kelly, the fear came because of the unknowns and not having a strong immune system. During vaccine creation, guidelines went public, and those who are immunosuppressed were recommended extra doses to accommodate their immune system. For Kelly, this meant getting multiple doses before others did, to which came of benefit when she tested positive for COVID 19.
During her life, Kelly has encountered dismissal of her disability from public systems. In the early 2000s, she went to part-time hours, and eventually her disability prohibited her from working anymore. Kelly spoke with a DHHS worker who told her to apply for disability benefits, but that came with great stigma and fear. “I never intended on applying for Social Security, I couldn’t work so I was told I had to apply to keep getting help.” says Kelly. Her first application was denied, and the tears kept flowing, and in the same breath the worker told her to “keep fighting.” Kelly got an attorney, and at court she was immediately approved when she showed up with swollen hands and feet. It was only then that her experience was taken seriously. Kelly took a job at an insurance office where she was sick constantly because working with the public brings germs and sicknesses. After nine months, she quit her job because she was consistently hospitalized or in the ER with fevers and deathly ill each time. She went to Michigan Rehabilitation Services where she was sent to a Center for Independent Living (now Disability Network Washtenaw Monroe Livingston) where her worker encouraged her to volunteer her time. This was in 2005, and while working at CIL (Centers for Independent Living) she continued to stay on disability benefits until her boss approached her about going full time. Ten years later, after multiple part time jobs and volunteer opportunities, she did go full-time but was scared that losing her benefits would impact on her life more than the positivity a full-time job would bring.
Although Kelly faces barriers on many levels, she was the biggest barrier to her disability because she wanted to believe it wasn’t there. She wanted to feel “normal”, and to “fit in” with social expectations. Her disability never ceased to exist; it was more so that Kelly was masterful in hiding it until it surfaced with greater strength. Kelly’s biggest fear is going back to the beginning when the pain was the worst, when the pain was insurmountable and independent living was not possible. With her voice trembling Kelly speaks about how she came to understand how people can say that they don’t want to live anymore and the mental agony that accompanies that experience. Kelly states that “With my condition I have good days and bad days and I am good at pretending the bad days are good; you just get used to it.” During difficult times people were still telling her that she looked “normal” and were actively contributing to the invisibility of her disability experience. Only a few years ago Kelly was diagnosed with Fibromyalgia, which she believes she has had for years but had gone undiagnosed.
Invisibility has been a consistent theme in Kelly’s life, and the invisibility of chronic illness is almost indescribable because of how easily pain and other symptoms can be suppressed or hidden. Each year, disabled people are swept under the rug when they voice an issue with their bodies. Disabled individuals are told that they “aren’t disabled enough” to constitute certain levels of care, however, this is not the case. Kelly has taken her own experience and modeled her life around how she feels and what she controls to help others who may have similar lived experiences. This shapes her work at Disability Network Washtenaw Monroe Livingston and all those whom she has impacted in the past and who will, in the future, benefit from her story.