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Midge Wilson and her husband Lonnie Wilson shared their experience navigating Chronic obstructive pulmonary disease (COPD) as a couple at the Black Health Matters Summit in Charlotte, North Carolina. The veterans and advocates spoke with Lisa Schmitt, US Public Affairs & Patient Advocacy Lead – Respiratory Sanofi.
“COPD is diagnosed as either chronic bronchitis or emphysema, and it is a chronic and progressive condition, meaning it worsens over time, causing permanent lung damage,” explained Schmitt. “It is debilitating, and it impacts people, both physically and mentally as well.”
According to the American Journal of Respiratory and Critical Care Medicine, “COPD is increasingly being recognized as a major health problem in America’s multicultural black population,” and “Black individuals in the United States may be preferentially affected by COPD.”
COPD outcomes are dismal in the Black community. It not only drastically changes the quality of life, it claims some lives. “Black individuals with COPD have higher mortality rates,” says the Journal of the American Medical Association.
Midge, a former devoted bodybuilder, described the moment when COPD showed up in her life. “I call it the original attack,” she said. One Saturday, she was going through her standard weight-lifting routine. After being able to lift over a hundred and fifty pounds easily, she found herself unable to even begin the process she was so familiar with. “I couldn’t get that empty bar from the rack,” she said.
The forty-five bar presenting a struggle confused her. Her fellow gym rats were perplexed, too. “I could not get the empty bar from the rack, and everybody in the gym thought I was kidding. But I was not,” said Midge.
Midge and Lonnie began to look for solutions.
She was misdiagnosed on multiple occasions. “I had dealt with it for quite a while, and the doctors were diagnosing me with asthma,” she said. She was living in the desert at the time and she was also told “You’re allergic to the desert.” Asthma ran in her family, so she accepted the diagnosis. But soon, Midge questioned why there was no progress being made. She felt increasingly worse no matter how many times she sought help. “As I begin to listen to the doctor, I’m thinking, well, why isn’t it changing,” she said.
It took a while to be referred to a pulmonologist who issued a correct diagnosis. “My mother always said, oh, you’re going to push the envelope. That’s what she told me. And I guess I did because I didn’t have asthma. I had undiagnosed COPD,” she said.
Take Action:
- Ask Questions
Midge did not just allow the doctors to misdiagnose her to manage all the aspects of her care. When she did not improve she and her husband followed up, again and again. It is important to continue seeking answers even when your family history offers what looks like a simple explanation. It might be more complicated than you think.
- Advocate For Yourself
Even with “great insurance” Wilson was forced to fight for accommodations that would allow her to resume some of daily activities. COPD might have made trips to Disneyland with her grandchildren a non-starter but she was determined to do as much as she could.
“They will assign oxygen to you, but you have this large oxygen concentrator that you’re tethered to,” she said. “So, how can I go to the grocery store and do my shopping if I’m tailored to this 140-foot wire?”
“You haven’t given me oxygen so that I can leave my home,” she retorted and continued to fight to be permitted to have the resources she needed to obtain the limited mobility she could.
- Don’t Be Afraid To Switch Doctors
The Wilsons were afraid to get second opinions. They needed the doctor that worked best for them. “We ended up firing two pulmonologists. We were just patients, just numbers,” Lonnie said. They searched until they found a provider who worked for them.
- Accept Help
Lonnie has become attuned to his wife, watching her needs closely. “I’ve been married so long. I know her and she knows me so I can just tell if it’s going to be a day where I need to hang around the bedroom more, hang around the house more, and not go anywhere,” he explained.
His responsibilities in the household have shifted due to his wife’s illness. “My role has stepped up immensely. “I do most of the cleaning. I do about half of the cooking,” he said. He paused to acknowledge how perception of gender roles plays into how their dynamic is viewed by outsider.
“Ladies, I’ve heard all the jokes,” he said. He is often told, “I wish I had COPD so my husband can just do the cleaning and do the cooking.” He is proud to be there for his wife. “It’s a labor of love,” Lonnie told the room.
Midge contributed heavily to the family as the pair served the country prior to their retirement. “Through the military, she was the glue that kept our family together while I was gone. So I have nothing but admiration and respect for her.”
He advises any caregivers in the room supporting a loved one to tend to themselves so that they would not burn out and become unreliable sources of support. “For caregivers, I would also say you have to take care of you,” he said. “I can’t take care of her if I don’t take care of me.”
