Quiet No More

Finding Strength and Compassion in Chronic Illness

• Carmen Cauthen

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What happens when your world flips upside down with a diagnosis that few understand?

Join me, Carmen Cauthen, on "Quiet, no More" as I share the raw and unfiltered journey through the maze of pulmonary arterial hypertension. From the unnerving experience of nodding off at traffic lights to the daunting task of explaining an invisible illness to my children, I unravel the complex layers of living with this rare condition. With a CPAP machine and oxygen therapy becoming part of my daily landscape, I face not only physical and emotional hurdles but also the financial strain that often accompanies chronic illness. This narrative isn't just about the hardships but also the resilience and determination to keep moving forward.

I firmly believe that empathy starts with understanding, and that's where my story takes a turn. Emphasizing the power of personal experience, I explore how facing health challenges with transparency can educate and inspire curiosity, particularly among the young. This openness has taught my own children the importance of kindness and the pitfalls of making assumptions about others' health. By sharing these insights, I hope to encourage a more empathetic society, one willing to communicate openly and break down the walls of misunderstanding. 

Join the conversation, and let's foster a world where asking questions is encouraged, and empathy is the norm.

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Carmen Wimberley Cauthen is an author, speaker, and lover of history, Black history in particular. As a truth teller, she delights in finding the hidden truths about the lives of people who made a difference - whether they were unknown icons or regular everyday people.

To Learn more of Carmen:
www.carmencauthen.com
www.researchandresource.com

Speaker 1:

Unseen, unheard. We've lived like that far too long. I'm Carmen Coffin and this is Quiet, no More. There was a point in my life when I was just I was tired. All the time I would be driving down the street and stop at a stoplight and fall asleep. I had young children in the car. It was scary. We'd even be on the highway and I'd realize that there weren't any cars close to me and I didn't know how I'd gotten to that point. I didn't remember what the last thing was I'd seen, so I don't know if I was asleep or not. I even remember traveling to Washington DC to take my oldest daughter and drop her off so that I could go to a conference, and having to pull over outside of Rocky Mount, north Carolina, which was less than an hour's drive, and renting a hotel room to go and take a nap because I was so tired and I just thought it was my weight. I thought I was overweight, I just wasn't sleeping well, but I didn't tell anybody because I didn't want anybody to know that I was falling asleep at stoplights. And I went to a conference in Vermont no, maybe it was New Hampshire. Anyway, we had to walk up a hill to go to an executive committee dinner and I almost couldn't make it up the hill and I'm still thinking I'm overweight, I need to lose weight.

Speaker 1:

It wasn't that I came back. I had started parking in front of the legislative building so that I didn't have far to walk to get into the building every day. And still some days I'd have to stop between the street and the front door to catch my breath, to get in, but I still wasn't telling anybody. I went to an event with a friend of mine my best friend and she had driven and we parked and I had about half a block to walk to get into the church that we were going into and I had to stop and catch my breath. And she looked at me and she said what's wrong? And I was like, oh, I just have to catch my breath. And she just kind of looked at me and she said you need to go see the doctor. Now I don't know if I would have gone to see the doctor and told him that it wasn't that I hadn't seen the doctor. I just wasn't mentioning that because I'm just thinking you're going to tell me I got to go on a diet. You're going to tell me I got to do this regimen. Da, da, da, da da, and I didn't want to do it. So I agreed to tell the doctor.

Speaker 1:

I made an appointment and I went and the doctor said let's run some tests. Well, it turns out I had severe sleep apnea. Like they woke me up shortly after they put me to sleep during the sleep study and switched me to a machine and I think they said I was having like 75 stoppings of breath an hour and it was pretty severe. So I still sleep with a CPAP, but that did not stop the sleepiness. And so they started to look for other things and the doctor sent me to a cardiologist. The cardiologist had tests run. They started talking about things like sarcoidosis, which is a hardening of your lungs and it will kill you at some point. And then, after we ran several tests, doctor said I need to do one more and that's a heart catheterization. And so they inserted a needle into my groin and ran it up through a bloodline and it turned out that what I had is a rare disease and it's called pulmonary arterial hypertension. So there is a constriction in the artery going from my heart to my lungs. It is a pulmonary disease, although I see a cardiologist who specializes in this particular disease, and they put me on medication. And they gave me medication. I mean put me on oxygen as well.

Speaker 1:

This was in 2009. And I remember the day I knew I was getting oxygen, but I don't think my children knew and the day that the respiratory specialist came to the house and brought the oxygen tanks. My oldest daughter just cried and it's hard to explain to people, when you look perfectly healthy, what's wrong with you. You know they don't get it. And I was still working. The doctor had suggested that I go home, go on disability, but I was the main breadwinner. We wouldn't have any health insurance to cover the medicine or the oxygen and the medicine. The copay for the medicine that I was taking at the time was a hundred dollars a month. No, that's not true. The copay was $300 a month. I had to find a program to help pay for my medication and I believe it got it down to $100 a month and that was stressful as well, because that was a lot of money for a bottle of pills to me. The oxygen helped, but I still was using the CPAP. So even at night I'm using the CPAP with the oxygen going.

Speaker 1:

Through that I was still traveling for work sometimes and I didn't realize I needed oxygen while I was in an airplane and when my doctor told me that I didn't have enough time for the next trip that I was going on, which was later that week, to rent an oxygen concentrator that I could take on a plane. So I flew without it and one of the things that they told me, as I'm walking, my oxygen sats would drop. And that was how they knew that I needed the oxygen. So I use a wheelchair to get me from when I get to an airport, to get around, because it just is too much for me to try to walk and carry bags and all that kind of thing. I remember on one trip returning home and didn't have it must have been this first trip I didn't have any oxygen with me but I had to wait for the wheelchair to come down the ramp to get me and one of the flight attendants both of them knew I was waiting for a wheelchair and one of them said to the other one what does she need a wheelchair for? She's fine, is she just fat? And I heard her and I was furious. And I heard her and I was furious. And so, as I got ready to go to the wheelchair, when they told me it was ready, I told her. I said don't judge people by what you don't know. I said I can't walk that far without oxygen or I might pass out. So, yes, I have extra weight on my body, but that is not the reason that I need the wheelchair and you should not make that assumption. And so she was very apologetic.

Speaker 1:

But what do you look like when you're sick? Sometimes you look unwell to others, but sometimes it's just like you know, asking a woman if she's pregnant because her, her belly fat is, is is big, um, I got belly fat. I'm not pregnant. Um, and you don't know that I have a rare disease. Uh, I have lost some weight, so I don't have to have the oxygen all the time, don't really have to have it at all right now. But it's important that you don't judge people about how they look. So what do you look like when you're sick? I look like I normally look. I still take medication that actually was originally being researched for pulmonary hypertension patients, and they found out that the properties of the medications would help men who have erectile dysfunction, and so the medication that I take was originally marketed for men for erectile dysfunction. Cialis and Viagra that's where they came from. They have different names for that medication for people who have pulmonary hypertension, but they marketed it for eight or nine years to men with erectile dysfunction before they started to market it for people who have pulmonary arterial hypertension.

Speaker 1:

And so if you see me and we're walking somewhere and I stop talking or you hear me panting, it's because I have to catch my breath. It's difficult for me to walk and talk at the same time. So you know, for me that's difficult because I like to talk and so I had had to learn to save my breath when I'm walking and talking and, like I said, I don't have to have oxygen anymore. But you just never know what people are dealing with. Do you think about what people are, especially women, who have a head covering on? Do you wonder if they're just not taking care of their hair and or having a bad hair day? Or do you wonder if maybe they're having cancer treatments and they've lost their hair? The same for men. Do you wonder if you suddenly start to see a man wearing a cap that he might be sick, he might have some health issues? We have to think about those things sometimes and not necessarily judge what we see. And you know, as my daughter would say, that's not my business. But sometimes even though it's not your business doesn't mean you don't wonder.

Speaker 1:

Wondering and making judgments are two different things and one of the things that I learned to do when I was using the oxygen all the time, because I'm the person who you might see me in the grocery store with pushing the cart with the oxygen contained canister in the cart because I was not going to stop doing what I was doing because I had to be on oxygen. I'm not trying to stop life for any of that kind of stuff. Children would see me and you know how we tell our children don't stare, don't ask questions. You know children have a a natural curiosity and a lot of times children will ask stuff that the adults want to know. They just think you know that's poor etiquette for me to go ask. I would take my oxygen cannula off of my nose and let the kids feel the air blowing through and tell them this helps me breathe and parents would look at me and they would go okay.

Speaker 1:

Well, I think it's important for children to be able to understand things that are going on. It was certainly important for my children to understand the health situation that I was living with. It has helped them to understand that. That's why they have to do the laundry, because one of the things I was told not to do was raise my arms up over a certain point and I couldn't fold the laundry. I was not upset about that, because laundry is not my favorite thing to do, but what else do people look like sometimes when and we don't know that they're sick?

Speaker 1:

I've had a child who had to have scoliosis surgery. She came out of surgery four inches taller than she was because her, her, her spinal cord was curved. I had a relative, an aunt, who had surgery and her rib cage, her organs, had been pushed up and when she came out of surgery, that had been relaxed and it had been causing her pain. We just never know. And so, again, it's important to not be judgmental and assume things.

Speaker 1:

Again, it's important to not be judgmental and assume things. It's also important to be kind and encouraging and help people, and so my children have learned to be helpers to people whose health is not necessarily as fortunate as others. They've learned. They learned to take care of elders. They helped with my parents. They would ride with them sometimes when my dad was having to go do something or they would, they know, to help. You know, fix the food or fix a plate and carry it to someone. So these are all important things, but think about it. What kinds of things have you had to deal with in terms of health that you didn't share with folks and they made assumptions. It's hurtful and you know it is. So let's be quiet no more as we work on those things. You've been listening to quiet no more where I share my journey. So you can be quiet.