Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (2024)

Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (1)

By

Lena H. Sun

July 7, 2024 at 5:00 a.m.

Lena H. Sun, a Washington Post national health reporter, has been reporting on rising measles outbreaks in the United States in recent years amid falling vaccination rates.

These days, most Americans don’t think about measles because vaccination had largely eliminated the scourge from the United States in 2000. Many doctors cannot even diagnose measles because they have not seen it in practice. But measles outbreaks are back. There have been more cases this year than in each of the past two years.

The measles virus is one of the most contagious on Earth; it can live for up to two hours in the air after an infected person coughs or sneezes. Up to 9 out of 10 people who are not protected will become infected if they breathe the contaminated air or touch a surface that has been infected. Measles is especially deadly for babies and young children who are not vaccinated.

Measles cases reported to the CDC each year

The WHO declared measles eliminated in the U.S. in 2000

In 2014 and 2019, localized outbreaks caused a spike in cases

Reports of measles dropped during covid-19

*Data through June 27, 2024

Source: Centers for Disease Control and Prevention

In the decade before a vaccine became available in 1963, more than 3 million people contracted measles every year in the United States; 48,000 were hospitalized, and about 400 to 500 died (many of them children), according to the Centers for Disease Control and Prevention.

Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (2)

Many people who survived measles as children — before a vaccine existed — never forgot how sick they were. They wanted to share their stories so others could understand what it was like to have measles and its long-term consequences.

They remember being confined in dark rooms to lessen the risk of blindness, a serious complication. They remember classmates and family members who died of other severe complications, such as dehydration or pneumonia, or swelling of the brain.

Here are their memories of surviving measles, in their words, edited for clarity:

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Wilde, a retired teacher for the visually impaired, was in second grade in 1963. The measles vaccine was already available, but she remembers her mother telling her years later that it was not yet in widespread use.

I just remember being very sick. I remember lying on the couch in the living room and being very hot, like I was under the sun. My parents were arguing about what to do. They seemed to be millions of miles away. I felt very detached. My fever was very, very high, and I was not responding to them when they were speaking to me.

They were afraid to call an ambulance because they weren’t sure if I was well enough to be taken to the hospital. They called the pediatrician. The next thing I remember, he was patting my face and I could see his nose hairs and feel his breath. He was calling my name and trying to rouse me. He said, “We’ve got to bring the fever down,” and told my mother to run cold water in the bathtub. He was concerned about brain swelling.

They stripped me down, wrapped me in a cotton sheet and put me in the bathtub. I remember I felt like I was screaming with every bit of strength in my body.

My mother told me later, “You sounded like a dying kitten.”

Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (3)

I was in the back bedroom in the darkfor several weeks to protect my vision. Gradually I got better. But I remember my eyes aching and me squinting. There are a lot of photos of me holding up a hand to shield my eyes.

Even now, when I get outside, my eyes ache. I also see little sparkles of light when I am in the dark. I know that is part of aging, but I still suspect if I had not had a severe bout of measles, I would have come through with far fewer vision problems.

Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (4)
Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (5)

Florence McGregor-Foxcroft

73 • Victoria, B.C.

McGregor-Foxcroft, a retired fingerprint technician, was in first grade in 1956. The measles vaccine was not yet available. Her older siblings had already had measles, as did many of her classmates.

I was 5 or 6. I had to be confined to a dark room, which was pure torture because I was just so bored. I couldn’t join the family for dinner. I couldn’t watch TV or any of that stuff. I couldn’t read.

I did something very naughty. I wrote a note on a piece of paper. It said, “Help, I’m being held prisoner.” And I pitched it out my bedroom window. And a neighbor showed it to my mother. And she just about had kittens.

She handed it to my dad and said, “The poor child is going crazy.”

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Another week after that, I was allowed to read or write for an hour in the morning and an hour in the afternoon.

When I went back to school, I didn’t have the energy to walk home for lunch. It was probably three-quarters of a mile. Sometimes the neighbor would just drive me home. They knew how tired I got.

Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (7)

Tim

30s • Midwest

Tim, a software engineer, spoke to The Washington Post on the condition that only his middle name be used because his family has been harassed for not vaccinating him as a child. He became infected as an adult in 2016 after attending a crowded school event and was hospitalized.

I attended a family member’s school ceremony in a large auditorium. That same evening, I flew out to Las Vegas for a conference. About three or four days after I got home, I started to get sick.

I had a fever up to about 104. And I started to get this terrible headache that felt like the worst flu I had ever had combined with the worst hangover that I had ever had. A day or two after, I got out of bed to use the bathroom and I just collapsed in the hallway.

My partner drove me to an urgent care facility. They tested me for strep throat. They ruled out meningitis. They didn’t get a positive diagnosis of strep. But they prescribed me some antibiotics and sent me home. I took the antibiotics for a couple of days, but I just kept getting worse. And I woke up one morning and my body was just covered in red spots.

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I ended up going back to the ER. Somebody asked me if I’ve been vaccinated against measles. This is when I realized that I wasn’t actually sure. I got confirmation from my mom that I had not been. They ran more tests and confirmed that I did, in fact, have measles.

They admitted me to the hospital into an isolation room. It was a teaching hospital, and it was the most surreal experience because no one had seen measles before.

They would bring in an army of doctors, and I had people asking, “Can I take a picture with you?”

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I start getting calls from our health department. They want to track down what happened. It turns out, at the graduation I went to, someone flew in from out of the country and had measles. I must have somehow walked past them. I didn’t interact with anyone. I didn’t shake anyone’s hands. I didn’t have any conversations with anyone that was not my family. A little bit of errant air coming my way that was all it took.

I was in the hospital three or four days. They sent me home under pretty strict guidelines not to go anywhere. This kind of started a whole new chapter of challenges. I lost about 20 to 25 pounds in the process. Walking upstairs, I would just be completely winded.

I ended up with immune amnesia, where it basically resets the body’s immune system. Everything that I would get exposed to — I would get sick. And every time I would get sick, I would get the worst version of being sick. Like, one of the bad colds I got turned into this full-on bronchitis where I just had no ability to talk. It totally changed the trajectory of my life for more than half a year.

I was recently diagnosed with an autoimmune disease, and I don’t necessarily know that it’s linked to measles. But I’ve kind of come to look at all of these things, at least in some way, as connected.

Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (9)
Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (10)

Michael Tidwell

68 • D.C.

Tidwell, a retired attorney for the U.S. Postal Service, got sick as a kindergartner in 1961, before the first vaccine was available. He infected his pregnant mother, who passed it on to his baby sister.

My father was in the U.S. Army. We lived on an Army base in Wertheim, Germany. Everyone in my kindergarten class had measles. I got measles. I had bumps; I had the itching. As a young boy, you almost wanted whatever was going around. You didn’t think of it as potentially deadly. It was sort of a badge of honor.

My mother got them from me during the course of her pregnancy.

After my sister Dianna was born in March 1962, early tests showed she had some sort of visual problems. Doctors tried to correct them with surgery. The surgery got botched. Then, at some point, it became evident she was going to be developmentally challenged.

My father was transferred to Fort Sam, Tex., and that’s when [my sister] experienced her first epileptic seizure. Over time, she began to develop a swallowing disorder. She lived with the family for as long as my parents were able to take care of her. Then, over time, she began to lose motor control; she lost the ability to walk. She had recurring bouts of pneumonia, and recovery always left her at a lower plateau.

She died in October 1995. She was 33.

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Dianna was the glue of our family. She never stopped believing in Santa Claus, which allowed the rest of us to take joy in playing along for a lot longer than most families get a chance to. Though she could never read, Dianna knew that the stories she liked were in books, and she liked making us read to her. Sometimes, she’d hand me two socks and insist on a puppet show. Nothing cracked her up more than when two puppets got into a fight. Keeping Dianna amused bonded us and taught me a lot about improvisation and flexibility that would serve me well throughout my life.

Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (12)

Barbara Leonhard

72 • Columbia, Mo.

Leonhard, a retired teacher of English as a second language, was 6 in 1958. The first vaccine was not yet available. She was in a coma and unable to walk for a period.

I was 6 years old when I got measles. It was 1958. That summer my brother and sister and I got it. I remember being feverish and feeling miserable. I remember my mom sending me upstairs to get something off the dresser. I ran upstairs and all of a sudden my legs gave out and I couldn’t walk. I couldn’t move my arms. I remember it was too hard to carry me up and down the stairs, so they finally made a bed for me in the living room on the couch. My mom made a tent of blankets and put me in there and had me breathe steam and spit out phlegm because I guess they were concerned about pneumonia starting.

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One night, I remember being swept up and taken to the hospital. I went into a coma on the way there. The last thing I remember was getting in the car. Everything went black. We went to the same hospital where my grandfather was dying. I thought when my parents put me in the car I was going to see Granddaddy. I remember talking to him. I remember saying to the people standing around the bed, “I want to go with him.” And they said, “No, you can’t go with him. You need to go back to your room.” The next memory I have I woke up from the coma.

That was like seconds to me, but I was in a coma for 30 days. I could talk, but I couldn’t walk. The doctor was saying, “Say, ‘The bear went over the mountain.’” And I said it.

And he said, “She’s okay. But she’ll never walk again.”

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But I taught myself how to walk. While my parents were gone to close up the family home, I remember pulling myself from one piece of furniture to another, dragging my body and just willing myself to walk. I didn’t want to be in that wheelchair. When they came home, I ran up to them, “Look, I can walk!”

Mom told me that before I had encephalitis [a complication from measles], I could hear a story once and repeat it word for word. After that, I had a hard time learning. I had problems focusing in school. I lost my confidence. It was hard to learn and hard to relate to people. I worked really hard, graduated high school with honors. I have a master’s in English literature.

But I’m going to be seeing a neurologist because I’m experiencing some nerve things. I don’t know if it’s related to encephalitis.

Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (14)

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Isolation, extreme fatigue, lingering misery: What it’s like to survive measles (2024)

FAQs

What are the three stages of the measles? ›

There are three distinct phases: 1) incubation period; 2) prodromal phase characterized by fever, malaise, conjunctivitis, and upper respiratory symptoms such as cough, nasal discharge, and sneezing which persists for 3 to 4 days; and 3) exanthem which begins as a rash on the scalp and behind the ears.

What are the complications of measles in adults? ›

Complications include:
  • ear infections.
  • diarrhoea.
  • pneumonia (infection of the lungs)
  • other respiratory infections.
  • encephalitis (inflammation of the brain) which occurs in about one in every 1,000 people with measles.

What is the isolation period for measles? ›

Measles is spread when an infected person breathes, coughs or sneezes. You're infectious from when you first have symptoms (around 4 days before the rash appears) until 4 days after you get the rash.

What to do if exposed to someone with measles? ›

If you think you've been exposed to someone with measles, talk to a health care provider. They'll provide advice on how to reduce your risk of infection, especially if: you're not vaccinated against measles. you haven't been previously infected with measles.

What are the 4 C's of measles? ›

Measles is an acute viral respiratory illness. It is characterized by: A prodrome of fever (as high as 105°F), malaise, and cough, coryza, and conjunctivitis (three "C"s) A pathognomonic enanthema (Koplik spots)

What is the survival rate of measles? ›

Three in 1,000 children who contract measles will die; however, if everyone is vaccinated, no children will die. Before the vaccine, there were up to 500 U.S. deaths a year from measles, and now it's completely preventable.

What damage does measles do to the body? ›

It can cause severe disease, complications, and even death. Measles can affect anyone but is most common in children. Measles infects the respiratory tract and then spreads throughout the body. Symptoms include a high fever, cough, runny nose and a rash all over the body.

What is the most feared complication of the measles? ›

Some people may suffer from severe complications, such as pneumonia (infection of the lungs) and encephalitis (swelling of the brain). They may need to be hospitalized and could die.

What are the worst symptoms of measles? ›

Symptoms of measles
  • cold-like symptoms, such as a runny nose, sneezing, and a cough.
  • sore, red eyes that may be sensitive to light.
  • watery eyes.
  • swollen eyes.
  • a high temperature (fever), which may reach around 40°C (104°F)
  • small greyish-white spots in the mouth.
  • aches and pains.
  • loss of appetite.
Nov 24, 2023

How long should a person with measles be isolated? ›

Ideally the patient would be assessed outside of the healthcare facility. Patient should remain in isolation at home through 4 days after rash onset, counting the day of rash onset as day zero. The patient may resume normal activities on the 5th day.

What is the prognosis for the measles? ›

The prognosis for measles is generally good, with infection only occasionally being fatal. The CDC reports the childhood mortality rate from measles infection in the United States to be 0.1-0.2%.

What does measles look like in adults? ›

Measles rash looks red or brown on white skin and may be harder to see on brown and black skin. The rash can be slightly raised and appear blotchy. The rash usually starts on the hairline and spreads over the entire body. Measles rash is not itchy.

What not to do during measles? ›

  • DON'T send a child with measles to school for about 10 days. They can give measles to others from 5 days before the first spots appear until at least 5 days after the rash develops.
  • DON'T give aspirin to a child younger than 16 during a viral infection to avoid Reye's syndrome.

Should you go to the ER for measles? ›

Call your child's healthcare provider right away if you suspect measles. Get emergency care if your child has: A fever higher than 105°F (40.5°C) Trouble breathing.

What can be mistaken for measles? ›

What illnesses can be mistaken for measles? Other illnesses that cause respiratory symptoms and a rash may be mistaken for measles. These could include chickenpox, roseola, rubella, hand-foot-and-mouth disease, fifth disease, scarlet fever, toxic shock syndrome, or an allergic reaction.

Are there 3 types of measles? ›

There are two types of measles, each caused by a different virus.

What are the steps of the measles? ›

The clinical picture of measles can be divided into three stages: prodromal, eruptive, and convalescent and should be suspected in patients with the classic triad of the three “Cs”: cough, conjunctivitis, and coryza.

What are the levels of measles? ›

Measles cases in 2024

There have been 12 outbreaks (defined as 3 or more related cases) reported in 2024, and 66% of cases (105 of 159) are outbreak-associated. For comparison, 4 outbreaks were reported during 2023 and 48% of cases (28 of 58) were outbreak-associated.

What are three 3 symptoms of the measles disease? ›

The first symptoms of a measles infection are usually a hacking cough, runny nose, high fever, and red eyes. Kids also may have Koplik's spots (small red spots with blue-white centers) inside the mouth before the rash starts.

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