I've Had Shingles At Least Six Times — Here's What You Need To Know

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young white woman with bright red dyed hair in a beige sweater looks down, seemingly in pain
Health And Wellness

The first time I was diagnosed with shingles, I thought I was going crazy. I was young — in my late twenties — and thought only older people got shingles. The thought I might be breaking out in a shingles rash never even crossed my mind.

What does shingles feel like?

It felt like I had a sunburn, but only in very specific places on one side of my body. My body was super tender to touch and the waistband of my jeans felt like a hundred sharp little needles being scraped across my skin, but nothing was there, that I could see. My skin looked normal.

I was convinced I was imagining things, and talked myself out of calling the doctor at couple times before I finally bit the bullet and did it.

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As many women know, pain that doesn't come from a specific and identifiable source is often dismissed by doctors. This had been true for me through multiple medical challenges in my teens and twenties, but it is particularly true for women of color and fat women. I can't tell you how many times I went to doctors with debilitating pain only to have it brushed off, so I assumed that's what would happen here. I left a tentative message explaining my symptoms, even laughing at myself on my doctor's voicemail.

Fortunately, I had a new doctor; a woman, younger than my previous doctor had been, who had always believed me and treated me like a competent adult who knows and understands her own body (imagine that!). She called back immediately.

"That's Shingles!" she said.

A shingles diagnosis seemed impossible to me. How do you get shingles, anyway? I wondered. I hadn't been around anyone who was sick or had a rash. Turns out, that was irrelevant in my case — but I will explain more about that later.

How do you get shingles?

Shingles is caused by the varicella-zoster virus (VZV) — the same virus that causes chickenpox. If you've had chickenpox, you can get shingles.

Until I was diagnosed with shingles, I didn't realize that once you've had chickenpox, the varicella zoster virus remains dormant in your body for the rest of your life. The virus may later become reactivated, causing the nerves and surrounding skin to become painful and inflamed, and thereby producing shingles. Sneaky little virus.

The only thing I remember about having chickenpox is lying on the couch with my brother, both of us dotted with the pink anti-itch lotion our mom had applied to our rashes with a cotton ball, but I've definitely had it.

According to The Mayo Clinic, the reactivated virus travels along your nerve pathways, causing painful blisters to appear on your skin. That's how my doctor knew exactly what I had without even having to see me. What seemed totally random and bizarre to me was actually so specific, it led her right to a shingles diagnosis.

So, in sort of an odd way, you kind of get shingles from yourself — or from your younger self, that is. Thanks a lot, kindergarten me!

My bigger question was how I got shingles at a relatively young age. I thought shingles was an "old people" disease.

The main risk factors for shingles include being over 50 years old, having certain diseases that weaken your immune system like HIV/AIDs or cancer, receiving cancer treatments such as chemotherapy and radiation, and taking certain medications.

I had none of those risk factors, but I was under stress. I had two tiny kids at home and a husband who worked 10-plus hours per day. On top of that, we were facing some financial challenges. In addition, I had cut calories from my already healthy diet and added 5-plus miles to my daily runs in an attempt to lose the "baby weight" after having my second child.

I had no idea how taxing this type of disordered behavior could be and realized too late that I was harming my body. I'd believed the societal lie that thinner equals healthier, but as I shed pounds, I also had multiple serious colds, sinus infections, and even influenza in just one school year.

I was thinner, but I was decidedly not healthier. My mind and body were stressed, and that made me extra vulnerable to developing shingles.

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Is shingles contagious?

As a mom who was with my children 24/7 at the time, my first concern was their health. Could they catch shingles from me?

According to the CDC, "The virus that causes shingles, varicella zoster virus (VZV) can spread from a person with active shingles and cause chickenpox in someone who had never had chickenpox or received chickenpox vaccine. VZV spreads through direct contact with fluid from the rash blisters."

I asked the doctor if my shingles were contagious, and she reassured me that unless I developed blisters, my children were not likely to contract it from me.

As the CDC explains, "VZV from a person with shingles is less contagious than the virus from someone with chickenpox. The risk of spreading the virus is low if you cover the shingles rash," so it was unlikely she would catch it from me, but I was still worried.

In addition, my children had been vaccinated against varicella as part of their routine childhood vaccine schedule, and that would help protect them, too. Thank God. I could not imagine a toddler and a preschooler living through that feeling of fire under my skin.

If you do develop blisters, as gross as it sounds, once your blisters crust over, your shingles are no longer contagious.

How long do shingles last?

The answers varies, but most reliable sources say shingles typically lasts three to five weeks. And while there's no cure for shingles, your doctor can prescribe medications to speed your recovery time and reduce your pain.

My doctor started me on an anti-viral treatment right away. Turns out sooner is better, and I was lucky to have caught the symptoms of shingles before any blisters showed up.

Despite being in pain, achy, exhausted, and running a low fever, I was fortunate to have a great doctor who helped me avoid some of the most painful aspects of a shingles rash by treating me immediately.

Can you get shingles more than once?

Some people are lucky enough to never get shingles, and most who get it will only experience that misery once. An article published by Harvard Medical School explains that the chance of getting shingles more than once is likely to be 5% or less.

That said, I've had shingles around six times in the last dozen years, and nobody really knows why. I've always caught it early on, and I've even had shingles once when I was pregnant.

The last time I had it, however, I finally developed the rash. I noticed that my skin felt like it was burning, but I brushed it off as irritation from dry skin. A few days later I saw a rash on one side of my neck and chest.

My doctor saw me right away, and swabbed the blisters which had not yet broken open in order to confirm his visual diagnosis.

Because my daughter was a baby, she was breastfeeding and always on my hip. To help keep her safe, the doctor applied a thick covering and sent me home with lots of gauze and tape to keep the rash covered. I tried to avoid letting her touch that side of my body, just to be extra safe. This felt especially important due to the fact that she was too young to have had her first varicella vaccination.

Soon enough, the pain faded and the blisters healed, so I could take the big, ugly patches off.

To be safe, I also followed all of the CDC's rules for how to help prevent spreading the shingles virus, which are:

  • Cover the rash.
  • Avoid touching or scratching the rash.
  • Wash your hands often.

The CDC also recommends avoiding the following people while you are contagious, as they are especially vulnerable to catching VZV:

  • Pregnant women who have never had chickenpox or the chickenpox vaccine.
  • Premature or low birth weight infants.
  • People with weakened immune systems, such as people receiving immunosuppressive medications or undergoing chemotherapy, organ transplant recipients, and people with human immunodeficiency virus (HIV) infection.

My late grandmother, who had shingles in her sixties, had a very bad case that left her with chronic pain. She felt like doctors never believed her that her pain lasted all those years, dismissing her symptoms as stress- or depression-related. In other words, they told her she was "crazy" and that her pain wasn't real. I don't know if my grandmother had shingles more than once, or if she developed chronic pain from that one time, but either way, she really suffered.

My grandfather and I were incredibly close, so when I told him I had shingles, he nearly panicked. After she passed away from cancer, my grandfather told me that for the rest of her life, when he went to hug her, she would curl away from him instinctively. Even decades later, she felt she had to protect that area of her chest and shoulder where her blisters had been.

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I reassured him about the wonderful anti-viral medications we can take now to help slow the virus, but I know he always worried for me. I believe my grandmother was truly traumatized by her experience with shingles — not just her pain, but also by the way the medical system treated her.

I don't know whether my grandmother was ever told this, but it turns out that the chronic pain she experienced from shingles is not unheard of.

The same article from Harvard explains that "about 1 in 10 adults who get shingles experience long-term pain, even after the rash has healed completely. This condition is called post-herpetic neuralgia (PHN). It may last for months, or even years. And it can be debilitating."

I'm not sure why I've gotten shingles so many times, but I'm fortunate that every time I've had it, it's been relatively mild. I've always been able to manage the pain with over-the-counter medications and healed with lots of rest and the medication my doctor prescribed.

Can you prevent shingles?

If you have the varicella zoster virus in your body, you can get shingles. There's no way to prevent it completely. But there are, fortunately, vaccines you can get that can help.

After my last bout with shingles, my doctor recommended I get vaccinated against shingles next time I come in for my physical. Due to the Covid-19 pandemic, I'm a little behind on my routine health care, but as soon as I can schedule an appointment with my doctor, I will be getting that shot.

As much as I feel like I can predict or anticipate a recurrence of shingles, I know it's easy to miss or dismiss early symptoms. I just don't want to go through that pain again, or even run the risk of getting a more severe case in the future.

I am older than 40 now, and aging does make your system more vulnerable. Having had shingles multiple times and actually having my doctor believe me has boosted my confidence when it comes to my own body, but some old part of me thinks I should be able to "tough it out" if I ignore the pain.

But with shingles, dismissing or ignoring your pain only increases the likelihood of not getting treatment fast enough.

That should be a lesson not just to patients like me, but also to our doctors.

Hopefully we can learn from our past, get proactive with our health, and our doctors will start taking pain more seriously — including shingles pain.

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Joanna Schroeder is a feminist writer and media critic whose writing has appeared in The New York Times, Time, Redbook, Cosmopolitan, BuzzFeed, Esquire, Vox, and more. Follow her on Twitter for more.