Dispatches from a Pandemic: ‘There’s got to be better options available to those with disabilities.’ What it’s like to endure COVID-19 with a speech disability

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Navigating the health-care system is a challenge when you’re sick with COVID-19 — but it can be even harder when you have a disability, says one Lubbock, Texas woman recovering alongside her husband from a coronavirus infection.

Kathy, a 46-year-old former library assistant who asked that her last name not be published, has a severe stutter that makes it difficult for her to talk on the phone. Her husband of 15 years, Jimmy, a 58-year-old occupational therapist, has mild cerebral palsy and slightly slurred speech. Both have asthma; Kathy also has Type 2 diabetes and an autoimmune disease called Sjogren’s Syndrome, which can cause lung complications.

“Jimmy and I are college-educated and keep up on the news. We saw how quickly COVID takes hold in the lungs, can cause pneumonia, and turn deadly in a matter of hours,” Kathy said. “It was so frightening. We knew we were high risk.”

Now in recovery, Kathy spoke with MarketWatch through emails, direct messages and a phone call about her husband’s and her COVID-19 ordeal, their difficulties seeking help, and her advice for other people in similar situations. The interview has been condensed and edited for clarity:

How are you both doing now?

I am symptom-free as of last Thursday. I’m still a bit tired, but otherwise OK. The health department released me yesterday so I can leave the house to go buy groceries, which I’ll do today or tomorrow. I still plan to wear a mask as a precaution to protect others.

My husband is finally fever-free after 14 straight days of a fever. He still has a cough, so that has to resolve before he’ll be released [from quarantine]. He coughs so hard he gags. But he’s definitely better. We feel like we can finally breathe a sigh of relief and feel confident we were part of the [large proportion of COVID-19 patients] who get a mild case. But the term “mild” is relative. There was absolutely nothing mild about it.

Can you lay out the basic timeline of your husband’s and your symptoms?

Jimmy’s symptoms started suddenly Saturday, March 28. He developed a high fever out of nowhere. He had a mild sore throat and an earache. Since I literally could not recall the last time my husband had a fever, my gut instinct was, “Here we go.” I had kept up in the news about the virus and was worried about my husband catching it.

While his work took extraordinary measures early to protect residents and staff, my husband had mentioned that they were running low on PPE [personal protective equipment], specifically masks. The next day, we went to our city’s drive-through COVID-19 screening and testing. They tested him for strep and influenza right from our vehicle. Both came back negative, so they tested him for COVID-19. He received a telephone call from the local health department with the results two days later. It was positive.

By that time, I too had developed symptoms. The health department told us that since I was symptomatic, I was considered a “presumptive positive.” They said I didn’t need to get tested, as it was very likely I had it, given how contagious the coronavirus is. I decided to not get tested because of how short the nation is on testing kits. I’d rather have my testing kit used to discover new cases, especially of health-care workers like my husband.

‘The woman who answered was polite, but could not understand me. She almost hung up twice, as she thought it was a prank call.’

I had absolutely no fever at all the entire time I was sick, but otherwise had the same symptoms as my husband: dry cough, indescribable fatigue, tight chest, heavy feeling in the chest. Jimmy did lose his sense of smell and taste; I never did. Jimmy had a moderate-to-high fever for 14 straight days. It finally broke Saturday.

We’ve each had an appointment with our primary-care physician via Zoom ZOOM, -78.36% . We’re more fortunate than others in that our doctor’s office is calling us once every day during the week to check on us and get our vitals. We also own a pulse oximeter at home and it’s a lifeline, literally. We can monitor our oxygen levels, which is so crucial with this virus.

The night of Sunday, April 5, Jimmy started coughing so hard, he started sort of gasping between breaths. My mind instantly thought, “Oh my God, he’s got pneumonia.” But since his oxygen level was still good, I knew he wasn’t in immediate respiratory distress. So instead of calling 911, I called one of the local hospitals’ emergency rooms.

I have a severe stutter that is hereditary. Talking on the telephone is beyond difficult. I primarily use text or instant messaging. The woman who answered was polite, but could not understand me. She almost hung up twice, as she thought it was a prank call. I finally, out of sheer desperation, handed the telephone to my husband, who was coughing nonstop. His cerebral palsy slightly slurs his speech a little, but people can understand him more than me. The ER told us to come on in. We informed them we both had COVID-19, and asked were they sure they wanted us to come, they said yes, but to have Jimmy wear a mask and for me to drop him off, as patients could not have family with them.

It was so hard. I dropped him off at the ER front door, then went home. Jimmy had a chest X-ray that was negative for pneumonia (thank God) and his blood work looked good. The ER physician told my husband he was just real sick with COVID-19. He received a prescription for hydroxychloroquine. My husband texted me and I picked him up a couple hours later. But the ER wrote him out a script — how the hell were we to take it to a pharmacy? Hello! We both have COVID-19. We can’t leave the house nor pass the script to anyone to fill, as the virus can live on surfaces. So I had to call the ER again and stutter my butt off, struggling to explain our situation. The nurse was very patient and kind, and sent the script electronically to the pharmacy. The pharmacy did a no-contact delivery the next day.

‘I’m used to being a person who stutters, and I’m used to challenges in life because of it.’

The hard part is all of this — calling the pharmacy, ER — had to be done by speaking on the phone. There’s got to be better options available to those with disabilities, even in the best of times — but especially during this pandemic.

Jimmy and I were both placed on a five-day dose of Plaquenil (hydroxychloroquine). Did it work? I don’t know. I think more studies need to be done on it in regards to treatment for COVID-19. I was on hydroxychloroquine most of last year for my autoimmune disease, Sjogren’s Syndrome, so my physician felt comfortable putting me back on it for five days, since I had been on it before. I’ve read reports of shortages of the medication, and as a person with an autoimmune disease, I’m concerned about others with Sjogren’s Syndrome, lupus, rheumatoid arthritis and other autoimmune diseases who are now having difficulty filling their prescriptions.

Tell me more about your challenges reaching out to the emergency room and pharmacy via phone. What did it feel like to not have your concerns heard, especially given the urgency?

It made me feel a bit helpless. I’m used to being a person who stutters, and I’m used to challenges in life because of it. Jimmy’s fallen twice in the past decade or so and broken both hips, separately. The first hip break, we were lucky to have kind strangers nearby where he fell who called 911. Second hip break, he had friends who called. Had I known that texting 911 was available in our area, I would have taken advantage of it.

But this was different. I was so afraid of Jimmy’s condition with COVID-19 getting worse suddenly. That’s why I called the ER. I was afraid he had pneumonia. Although the receptionist was kind, having her think it was a prank call was infuriating. We were being responsible and calling the ER instead of just showing up. We both had COVID-19 and didn’t want to expose anyone.

Although Walgreens WBA, +5.14% does offer an online pharmacy chat on their mobile app, you cannot use it to ask to have your prescriptions delivered. I tried. They said I had to call in person. Walgreens, like most businesses, has voice-activated menus. I stutter. Those two don’t mix well. They need to have it where you just push a button. So the call gets sent to a national Walgreens call center. I tried to explain the situation, but the guy couldn’t understand me and just said drive up to my local pharmacy, which we couldn’t because we’re quarantined and cannot expose others. Finally I get the guy to transfer the call to my local Walgreens. But I have to explain the situation all over again. Luckily the local pharmacy knows us and knows I stutter, so they were patient.

[Editor’s note: Walgreens did not immediately return a MarketWatch request for comment.]

That’s the problem I face all the time when calling insurance companies or phone companies anywhere. I face talking to multiple people explaining the same thing over and over again. It’s crazy. People with speech impairments mainly use text or instant messaging these days. It’s time for companies, hospitals and emergency services to step up and create a separate line where we can text.

[Editor’s note: Some emergency call centers do offer text-to-911 services, but the Federal Communications Commission notes that they are “only currently available in certain locations” — in about a quarter of the country’s public-safety answering points (PSAPs), according to FCC data. New York City will reportedly introduce its text-to-911 service in June, following a lengthy delay. The service is available in Lubbock, though Kathy said she and her husband, residents of the city for more than a decade, “had no idea.”]

‘It was so frightening. We knew we were high risk,’ said Kathy.

Courtesy of Kathy

Tell me more about your stutter and about Jimmy’s cerebral palsy — what has that been like over the course of your lives? How were those difficulties exacerbated by the pandemic?

My stuttering is severe. In my case, it’s hereditary on my father’s side. When I’m tired or stressed, it’s worse. Growing up, and even still, strangers might think I’m just nervous or something and I just need to “relax.” What they don’t get it it’s physiologically based; it’s not anything mental. I think as I age, my stutter has gotten more severe.

Living through the pandemic with a stutter was scary. You heard me on the telephone — now imagine trying to call an ER and having the receptionist try to hang up on you, and not understand you at all. Most hospitals and 911 don’t have a texting or messaging option. They need to. There’s absolutely no excuse.

Jimmy’s cerebral palsy is a result of a blood clot caused by forceps at his birth. The blood clot broke loose when he was three days old. So it’s basically a stroke. He walks, drives and works as an excellent occupational therapist. He just walks with his gait off; a little slurred speech. His cerebral palsy is mild, compared to many who are wheelchair-bound. He’s fought hard to succeed in life. He’s an excellent occupational therapist. He can motivate patients who are unmotivated.

Luckily, his speech isn’t as bad as mine. So when I handed the phone to him when we called the ER, they understood him. His speech is more slurred. My speech has more “blocks” where there’s more periods of no sound.

‘To try to not panic when emergency services, medical personnel and businesses cannot understand you. Don’t give up. Have a plan.’

What’s the biggest lesson you’ve learned from all of this?

It’s an unpredictable, insidious virus. It affects people differently and there’s no way of knowing how severe you’ll get it. It doesn’t care who you voted for, what God you worship or the color of your skin. It. Doesn’t. Care. Both my husband and I were ultra-careful on handwashing, social distancing, etc., yet we still got it.

What advice do you have for other people with disabilities (particularly speech disabilities) dealing with COVID-19?

To try to not panic when emergency services, medical personnel and businesses cannot understand you. Don’t give up. Have a plan. Seek out help if you need to. If I had to, I was going to text one of my siblings to call the ER. All of my family live out of state. (I’m from Missouri, but married a Texan.) It sounds crazy to have someone out of state call my local hospital, but I couldn’t just run next door and ask a neighbor to do it.

That’s the thing with COVID-19. You’re isolated. Everything has to be done remotely, usually by phone. If you are hung up on, or God forbid laughed at, by whoever you’re seeking help from, keep trying. Call back. Text a friend or relative to call for you if you have to. Be persistent.

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