atypical

What It’s Like to Be Allergic to Wi-Fi

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On the Breaking Bad spin-off Better Call Saul, the character Chuck McGill, a lawyer played by Michael McKean, has a rather memorable condition. He frequently wraps himself in a space blanket to protect his body from cell phones or wireless internet, claiming the electromagnetic fields emitted by these devices sicken him. He has — or thinks he has — a case of what’s known as electromagnetic hypersensitivity, or EHS.

This is not a condition most doctors recognize. The Guardian was quick to debunk the supposed science behind EHS, claiming that the condition is overhyped by the media, and that while the symptoms sufferers report may indeed be real, it’s psychological rather than physiological. That sentiment was echoed by George Johnson in the Times, who wrote, “From the perspective of science, the likelihood of the rays somehow causing harm is about as strong as the evidence for ESP.”

While EHS is acknowledged by the World Health Organization, the group notes that its associated symptoms (like dizziness, nausea, heart palpitations, and redness, tingling, and burning sensations on the skin) are not part of any single recognized syndrome. It estimates that EHS affects a few individuals per million, and, drawing on data from self-help groups – states that about 10 percent of cases are deemed “severe.” The WHO is firm in its position that “EHS can be a disabling problem for the affected individual” but it “has no clear diagnostic criteria and there is no scientific basis to link EHS symptoms to EMF exposure.”

But those who suffer from acute symptoms would beg to differ. There are support groups across the world and communities of electromagnetism refugees gathering in places like Green Bank, West Virginia – a town where most forms of electromagnetic radiation are banned. EHS activists cite the work of scientists like Andrew Marino, who, in a case report published in a 2011 edition of the International Journal of Neuroscience, used double blind tests to show that EHS “can occur as a bona fide environmentally inducible neurological syndrome.” Setting aside stereotypes of pasty recluses living in aluminum-insulated houses reading library books by organic candle light, what is it actually like to experience extreme physical symptoms seemingly brought on by electromagnetic fields?

Dafna Tachover, a 42-year-old attorney who lives in Jerusalem and New York, has been experiencing what she refers to as electro-sensitivity for the last five years. She spoke with Science of Us about her experiences.

So what technology can you use?
Anything that is not wireless. I can use a computer, and dial-up internet, a landline (but not cordless phone – they are like small cell towers). I use a screen over my computer monitor to reduce the electric fields. My keyboard and mouse have wires. And I put the cable transformers in a metal bin because it reduces the magnetic fields. The Wi-Fi and Bluetooth on my computer are disabled. I don’t have a cell phone, not even for emergencies. I’ve never used a smartphone. I’m sensitive to Wi-Fi, not technology in general.

When did your symptoms start?
July 2009. I was so excited to go buy a new laptop, because I love computers. But when I opened it, something didn’t feel right. The left side of the mouse pad was vibrating. It made my fingers tingle. I’ve been working with computers forever so I knew there was a technical problem – maybe too much static electricity. I exchanged it, and the store confirmed it was defective.

But when I turned on the replacement computer the screen was jumping, and I felt pressure in my heart. I felt hot when I was by the computer, but it calmed down when I moved away. I took that second laptop back and got a different model from a new store. Then everything got weird. At one point I was talking to my ex-husband and I didn’t understand what he was telling me, it was like a brain disconnect. And my heart was jumping. My face felt like it was on fire. I was nauseated. All this would start when I was near the computer.

Did you think it was the computer that was causing it?
I really had no idea. I did an internet search: “heart jumps when using laptop,” and I saw so many complaints. I’ll never forget one from a pregnant woman saying that when she was using the laptop the fetus would kick. I decided to go to the actual Apple Store to confirm that there was something wrong with the third computer because this was just too odd.

The woman said, maybe your body doesn’t like Apple computers? They checked the laptop and confirmed it was defective. I went back home and then same thing happened – this was the fourth laptop. I returned the computer. My ex-husband, an MD & PhD in molecular biology who worked as a scientist at Princeton University when I got sick, talked to a professor from his department who suggested that maybe my body got overwhelmed, as new computers emit high levels of chemicals. He said to just take a break. Now, me taking a break from my computer, bad idea!

Did you use computers a lot before that?
Nonstop. My computer is my best friend. There’s nothing I love more.

So what did a break entail?
At the time I didn’t have a landline, so I used my cell phone. But it started to give me pains, like someone was drilling in my brain. After a few weeks I really needed a computer so I thought I’d try a desktop. I got one of those big iMacs. I went to call family in Israel on the computer, but I just could not stand by it. I was about four meters away. It felt like a strong pressure was pushing me back – really intense all over my body.

What did you do next?
The most scary symptom was my jumping heart, so I went to visit a cardiologist. I was fit and active — I swam and did two or three spin classes each day – so why would I have chest pains? There’s no heart disease in my family.

You didn’t go to see a family doctor first?
No, I didn’t even have a doctor — and I was married to one! I hardly ever got sick. The last time I took antibiotics was twentysomething years ago.

What happened when you saw the cardiologist?
I brought a laptop along so she could test me with it and without it. She said she knew my symptoms are real because every time she uses her laptop she feels nausea. So we did the testing. But I didn’t know the Wi-Fi was causing my symptoms and when she tested me the Wi-Fi was off, so it’s not surprising that they didn’t find anything wrong. She called NYU’s occupational clinic to get their opinion. They said they’d heard people say they feel sick from using the computer but there’s no scientific evidence to support it.

So you grew up in Israel? How’d you end up in New York?
I get bored easily. I did my law degree in London, took the bar in Israel, and worked for the D.A. in Jerusalem. Then I worked in advertising and PR and did an MBA. It was a really bad economic time, so I left for the States and I ended up in Manhattan, met my husband, and got a job at an investment company. When the market collapsed I lost my job and we moved to Princeton. I was going to open a law practice. I got that laptop for the office in my new law firm. We wanted to have children so we decided it was a good time. We tried for a while without luck.

Was your inability to get pregnant stressful? Or was there any other stress in your life when this sensitivity developed?
I was very apathetic. I wasn’t ready to start running to specialists. And I mean, my husband was working every day until 3 a.m. – maybe that’s why it was hard to get pregnant! I was starting a new career … is that stressful? Yeah, but everyone has stress. I loved my life. I’d go to lectures and meet the most interesting people in the world. I saw shows and concerts and opera.

Where did you meet your husband?
On JDate. I was sitting in Starbucks stealing their Wi-Fi.

So you were something of an early adopter?
I was always into gadgets and electronics and computers – well, maybe not always. Both of my parents are computer people — they met at a computer course. I started learning computers at school in ninth grade, but I didn’t really like it and all my parents did was talk about computers. So, back then, I actually hated computers. When I joined the army, I thought it was a bad joke when they put me on the computer track. I ended up commanding the computer center for the army’s headquarter and for the operation center, serving more than 600 users with computers networks including the prime minister and chief of staff. So I spent two years sleeping in a room that had dozens of wired routers and monitors and computers – but this was not wireless. It was one of those jobs where you don’t want to remember everything. When I finished it was almost like I did a control-ALT-delete to my brain. I forgot everything I’d learned about radio frequencies, antennas, and all that.

So how did the illness progress after you first started experiencing symptoms?
Weird things continued to happen. For example, I was on one side of the bed in my apartment and I would get this really sharp pain in my head. When I moved to the other side, it stopped. I noticed there was an electric socket there and I asked the maintenance guy to disconnect its electricity. I didn’t really want to use the computer so it was difficult for me to research what was going on.

I contacted a neurologist, and even though I’m very independent I took my husband so they wouldn’t disregard me. The doctor said, You know I have never heard of anything like this before. If I couldn’t see you I might think that you have some sort of mental issue, but you seem sane. I took two tests — an EEG, which detects electrical activity in the brain, and an EMG, which sees how your nerves respond to electric currents.

Did they find anything wrong?
No, because there is nothing wrong with my body unless it’s exposed to wireless. When I live in a radiation-free environment I do not have symptoms. My heart is fine and my nervous system is fine.

What was that like, not really knowing what was wrong at the time?
I hoped it was a bad dream, that I’d wake up and the symptoms would have vanished. But it got worse and worse. In the end, I called a family doctor my husband knew in Manhattan. The secretary said I have electro-sensitivity and gave me names of two websites.

I couldn’t use the computer so I waited for my husband to come home and on these websites we saw they sell pendants to protect you and we started laughing. We were like, Oh my God, we are in deep shit! These websites are selling all this, which means there are people suffering and nobody can do anything for them they are so desperate. And whoever wrote the science sections on these sites really didn’t know what they were talking about. So, that was how I got introduced to electro-sensitivity. Then a friend told me about an article in Prevention magazine all about how electromagnetic fields make people ill.

Were you able to function and go on with your everyday life?
I couldn’t be anywhere and I couldn’t sleep. I decided I’d go back to Israel for a while maybe things would be better. The first day I arrived we were driving along and suddenly my head felt like it was exploding. I see a shopping mall with a white strip on the roof. I asked my mother what it was, as I could feel the pain was coming from there, and she told me they were cell-phone antennas. I started crying. That’s when everything collapsed. I was just laying on the floor. We went to buy radiation shielding materials for the windows. I couldn’t stand up in the house.

What happened next?
I came back from Israel and I couldn’t sleep. The pain was intolerable — I couldn’t think properly. I went for a month without any sleep. Someone wrote me that there’s a place in Green Bank, West Virginia, where nobody is allowed to use wireless signals. I contacted her and she said I should go stay. I drove nine hours there that same day. But I felt really ill in her house because I was so sick at the time I was reacting to any electricity, not just wireless.

Soon after I got there I met a very intelligent pilot from California who had gone there with his mother because he was so ill. These were my first encounters with other people like me. I put a tent out on her porch and I was flooded with clarity. It was freezing cold, but it was like my head was finally quiet. I had the cry of my life.

Why were you so sad?
I met these people who were so sensitive and most of them had been in that state for years. I didn’t identify as electro-sensitive, I just felt like I was having a short-term problem. But that night I knew I was in a different reality, this wasn’t a bad dream. I could not return to society. I worked on a farm and looked after 15 horses, five goats, two llamas, and a sheep. And I felt better. I remember I called home and my 12-year-old niece told her mom that Dafna was talking “normal” again. I enrolled to take the West Virginia bar, I tried so hard to be there. But I’d lost everything. Culturally, Green Bank is so different to what I knew. I felt so disconnected because I couldn’t use technology and this unfamiliarity was just another layer of disconnection. I didn’t know how I was going to survive in the world, but I knew I couldn’t do it there.

Were you still with your husband at the time?
Yeah. After three months I decided to try to find a house where we could live together in some sort of normality. But when I went back to Princeton to do the search I couldn’t sleep in our apartment, so I had to sleep in my car for seven months. And sleeping’s not the right word because the pain would never stop.

Where did you sleep? Were you scared?
In a parking lot, it was horrible. I put clothes on the windows so people wouldn’t see me. I was afraid whenever someone came by. My husband couldn’t really help me, because he needed to work. There was a lot of tension.

Did he try to stop you from sleeping in the car?
There was really very little he could do. I really felt sorry for him. The worst day, perhaps, we’d arranged to meet at his work. I was driving around the parking lot trying to find a spot where I didn’t feel sick. I was sweating like hell. I see him and his face went blank and sad, and as he was making his way toward me he encountered a woman he knew. His face lit up and he was congratulating her on her new job. I wanted to commit suicide. I could see him make the comparison between us. He was going through his own nightmare. He married a vibrant, normal, healthy person and that all collapsed.

What did you do during the day?
Desperately searched for spots where there was no radiation. I borrowed books from the library and I’d sit and read in the car by a park. Every time someone came near I had to leave if they had a cell phone. I wondered if this would be the rest of my life … the world felt so hostile. I heard of a conference about electromagnetic sensitivity and I found a list of speakers and called one who was electro-sensitive herself. We really connected. We’re around the same age and both used to be really successful career women. She lived in an isolated place in South Carolina. She said, Why don’t you come here? I packed my bags again.

What was it like when you got there?
It took time for my body to calm down, but I do think I started sleeping after about the fourth week and it was great. After six weeks, I went back to Princeton. I still wanted to find a house I could live in with my husband. Eventually I found a farmhouse about 40 minutes from his work. It was a duplex, so I asked the neighbors if they could turn off their Wi-Fi.

That must have taken courage. How did you ask?
I just knocked on their door and told them that I’ve looked at over 200 houses and this is the only one that works but I can’t live here if they use Wi-Fi, because I have a problem, so could they turn it off? When I moved in I realized I didn’t want this to destroy my husband’s life as well as my own. It was too far for him to drive because he was working crazy hours, so we split up. I was still feeling sick as there was still radiation in the area because of cell towers, so I decided to move again.

So it wasn’t just Wi-Fi that was making you sick at this point?
No, my theory is that once you become affected by the radiation, something happens to the nervous system and it recognizes the radiation as a threat and then reacts to warn the body that something is wrong. So while the first reaction was to wireless, I then started to react to anything with vibrations, anything that the nervous system detected, so I started to be affected by electricity, then light and sound.

So, back then, what was the criteria for a place you could live?
The house had to have a gas stove and I could not tolerate a fridge, lights, a dishwasher, microwave, washing machine. I was still reacting to all electricity because my electro-sensitivity was so bad. Mountains block radiation and I couldn’t have neighbors so I decided on the Catskills. I think we found 500 potential houses, only 60 of which we went to see and only one of which fit. For a few months I just lay in bed sleeping and even then I was still feeling the electricity. I’d leave the house and go into the woods when I did the laundry. My divorce was finalized about five months after I arrived.

Did you keep in touch with people?
Even a regular phone hurt my ear so I used a speakerphone. The future didn’t look so exciting. I had to create a life there. I’m from a sunny, desert country and here I’m in the freezing mountains where I didn’t know anyone. I met a woman who became my best friend and then I started a book club. I missed getting dressed in the morning, feeling beautiful, and going to work. When I could make it to the supermarket I’d chat away to the cashier just to have some interaction. I created a pretty interesting life there: I grew vegetables and I had beehives, but I just couldn’t live like that.

Did you tell people that they had to leave their cell phones behind when they visited?
There was a sign on my door. Nobody was allowed in my house with a cell phone.

How did you keep warm?
I couldn’t use electric heat, just a wood stove. I’d sit under lots of coats and wear snow pants.

Did you feel better there?
After a few months my body started to recuperate. I could tolerate electricity again so I could work on the computer. I began to dedicate my time to expose the harmful effects of wireless signals and work towards the recognition of electro-sensitivity. Around that time, my sister told me that they put Wi-Fi in my niece’s school in Israel and I was surprised to learn this because I knew of an earlier decision by the government that schools should prefer the use of wired internet. I decided to fight the government — I just couldn’t think of children going through what I’d been through.

Did you go back to Israel?
I managed the lawsuit from the U.S. I was 6,000 miles away and I had a dial-up internet connection, but I just decided I was going to do it. I could hardly use email – sometimes it worked, sometimes it did not – and it took an hour to attach a file. We were able to get a conditional injunction against the government, which was huge because very few cases get to that level and it meant the court was substantially convinced by our claims. They would still have to decide if this injunction would become permanent – which would require a hearing. We are still waiting for a decision.

Meanwhile, I had decided I would move to Santa Fe. Everything was packed and then just before I left I decided to go to a symposium on Wi-Fi. Even though I didn’t go to public places, it had become my specialty so I felt I had to. I spoke when there were questions for the public, and I realized that people need to hear me talk about it, to understand it. The next day I put my stuff in storage and bought a ticket to Israel. I went even though you are exposed to so much Wi-Fi on a plane and you are trapped. I was really terrified and I felt so sick for the first three hours, I had to ask the man sitting next to me to stop using his iPad. I could not speak. In the end I drugged myself with Melatonin and hoped for the best. I planned to come back from Israel but when I got here I had my family and the weather was so beautiful, I stayed.

What’s your life like now?
Israel is very high-tech – there are huge cell towers every 400 yards and there’s open Wi-Fi on the streets, so finding a house is mission impossible. I cannot drive for two hours on the roads here and not feel like fainting — I fall asleep and I become very weak. For five years I was dreaming of the Mediterranean Sea and I can’t even go to the beach because it makes me sick. I can only be in town for a few minutes. I don’t go anywhere. It’s like being in a prison cell. I haven’t been to the movies for five years.

How do you spend your days?
Working on my computer, sometimes for 14 hours a day.

Do you have much of a social life?
I have friends but I haven’t been in a relationship since my ex (keep in mind, I lived in the mountains where there were more bears than men!). I’d be the cheapest date ever, though, because we wouldn’t be able to go anywhere.

Do you have a theory about what exactly started this?
Yes, but it is a theory. Something in the first computer caused the appearance of the symptoms. I think something was defective and probably created a strong electromagnetic shock to my body. It may be that the accumulated use of wireless technology and the fact that at the time I was sleeping three feet from a circuit breaker weakened my body, and then that laptop may have been the “last straw.” I will never know the definitive answer to this.

Do you think your friends and your family take you seriously? Have they ever doubted your condition?
I’m articulate and I can explain the science behind everything, so I haven’t encountered that much doubt. And I think I had an advantage because my ex-husband is a doctor and a scientist. I do remember once when I went to get blood tests and I told the doctor the story of what happened. She said, “You know, maybe you have a phobia of computers.” I explained that my computer has always been my best friend and I managed the computer operations for the Israeli army, so I didn’t think so. She said maybe I should see a psychiatrist. I made a big scene. I’m very intolerant when people deny it.

I was once outside my house in N.J. with my friend who is a journalist. I could tell he was skeptical, and I said a few seconds there will be a plane coming from that direction. And there was. And then I said now there will be another one, and there was. That proved it for him and then he didn’t doubt me. I could feel the radars from the plane.

It takes a lot of energy to not get depressed by it. People say that the electro-sensitive are crazy. I know very few people who could live in such an absurd situation and keep their sanity. I just don’t think about the future. If I consider all the new Wi-Fi towers I go insane — how can I live in a wireless world if it makes me so sick?

What It’s Like to Be Allergic to Wi-Fi