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By Christina Gentile, PsyD, as told to Barbara Brody

First things first: Stress does not cause Crohn’s disease. But physical ailments often overlap with mental ones. And Crohn’s is hardly the exception. Research suggests that people with inflammatory bowel disease (such as Crohn’s and ulcerative colitis) are two to three times more likely than members of the general population to struggle with anxiety or depression.

Even if you don’t meet the official criteria for an anxiety disorder or major depression, living with Crohn’s disease might make you feel stressed, frustrated, upset, or scared. Navigating a new diagnosis, having debilitating symptoms, and adjusting to changes in treatment can be very challenging. 

Whether your mental health problems tend to be mild or more serious, don’t be surprised if they get worse when your Crohn’s is flaring. During a flare, you might feel anxious about having urgent, bloody diarrhea or flatulence. You may worry about whether you’ll be able to find a bathroom in time. You could feel embarrassed about your symptoms. You may develop body image issues, which might prompt you to withdraw from social situations.

Fear of food and its effect on GI symptoms is another common issue for people with Crohn’s. It’s natural to be concerned about how eating might worsen your condition. But if you get so scared that you drastically restrict your diet, you may be at risk for an eating disorder called avoidant/restrictive food-intake disorder (ARFID). That can lead to malnutrition and unhealthy weight loss. And it can take a toll on your relationships.

Whatever kind of mental health issues you’re facing, don’t ignore them. Help is available, and it can make you feel better physically and emotionally.

The Gut-Brain Connection

One reason Crohn’s disease is so closely connected to anxiety and depression is that your brain and your gut are linked through your vagus nerve. Signals run in both directions along this pathway.

Although Crohn’s is an autoimmune disease that causes inflammation in your GI tract, what’s going on in your mind can certainly affect your digestive health. Research has shown that people with inflammatory bowel disease who also have anxiety or depression are more likely to get frequent flares and tend to have a lower quality of life.

As a clinical health psychologist who specializes in digestive diseases, I try to understand how Crohn’s disease affects my patients’ daily lives. I’ll come up with a treatment plan that uses skills-based training to help them better manage flare-ups and improve their quality of life. When I meet with a patient, I teach them how to reduce stress and manage it better. I also help them deal with negative thinking patterns that may keep them from coping well with their Crohn’s disease.

Learning how to manage stress and anxiety related to their symptoms can reduce their risk of flares. It can also help them cope with symptoms when they do occur.

Treatment Options

Several different mental health treatment options may be helpful for people with Crohn’s who are having anxiety, depression, or trouble coping with their diagnosis.

The best-known treatment is cognitive behavioral therapy (CBT). It aims to identify and challenge negative thought patterns and behaviors that can increase stress, lead to worsening mood or anxiety over GI symptoms, or interfere with managing Crohn’s disease. 

Another approach is acceptance and commitment therapy (ACT). This has a slightly different focus. It emphasizes accepting what you can’t change (your Crohn’s disease and the discomfort that might come with it). It involves becoming more mindful of your thoughts, emotions, and gut sensations. It also teaches you skills to improve your quality of life, even in the face of your symptoms.

Many people with Crohn’s also benefit from gut-directed hypnosis. This involves deep relaxation techniques combined with soothing images and verbal suggestions, aimed at calming your digestive system and managing pain.

Getting the Right Help

If you’re struggling emotionally because of Crohn’s disease, your first step should be to talk to your gastroenterologist, who may refer you to a mental health provider. Ideally, you’ll work with someone who has special training in gastropsychology, a discipline within clinical health psychology that focuses on digestive diseases. You can also try searching for an expert near you at the Rome Foundation’s gastropsych registry.

If you can’t find this type of specialist in your area, look for a mental health professional who has experience with chronic health conditions, stress, and anxiety disorders. You doctor may be able to recommend someone. Or check with your local hospital or health center.

Assuming that your mental health issues are mostly related to having Crohn’s (and not part of a broader anxiety or depressive disorder), you’ll probably benefit fairly quickly from a skills-based treatment approach.

When you find a provider, be as direct as possible about what you hope to get out of the experience. Maybe you want to focus on how your anxieties over Crohn’s are keeping you from getting restful sleep. Or maybe you need to learn to cope with discomfort and pain without getting stressed about it. Setting a clear and specific goal will help you make the most of therapy so you can feel better faster.

By Frances Downey, as told to Sarah Ludwig Rausch

I was diagnosed with psoriatic arthritis 9 years ago. Looking back, I realize that I had the symptoms for quite a while before that, and it took about 18 months to get diagnosed. So I’ve had this disease for about 12 years.

There are plenty of challenges when you live with psoriatic arthritis. Since I’m single, some of mine may be different from someone who has a partner.

For instance, because my flare-ups look like I have the flu, if I’m having one and I’m in bed, there’s no one to clean the house, do the laundry, go grocery shopping, or pick up my medications. I have to rely on others to do that or I just do without.

It’s also really hard dating, especially knowing when to tell the person that you have this disease. When I have brought it up, they don’t get it. They think of their grandmother who has arthritis and don’t realize that this is different and can affect your whole body.

I’ve heard from many people that they’ve lost friends due to psoriatic arthritis. I certainly have. People just don’t understand this disease and that it’s unpredictable. Sometimes you’re unable to keep social plans because you don’t feel well, and that can be hard for friends and partners.

Despite the challenges, I’ve learned ways to handle my disease and make life easier on myself.

Track Triggers for Flare-Ups

I believe the major trigger for flare-ups is stress. For me, when my medications aren’t working, that can cause a flare-up, too. My doctor says lack of sleep is another cause. Certain foods may be a trigger too.

What causes a flare-up for one person doesn’t mean it’s going to lead to one for someone else, though. And sometimes you have a flare-up, and the doctors can’t figure out what caused it. It just happens.

The key to recognizing triggers is keeping a log. There’s a great app called ArthritisPower that helps you track your sleep, fatigue, pain, and other symptoms. This can help you figure out triggers. It shows you the data it collects in different charts and graphs. You can email that information directly to your doctor so they can use it to have data-driven conversations during your appointment.

The data is donated to the research registry so that researchers can use it for their studies. You can also participate in surveys and other studies that are going on inside the app.

Keep Stress at Bay

I’m a more relaxed person than when I was diagnosed because I found out very quickly at the beginning of my own experience that stress caused flare-ups. So I’ve been training myself over 9 years to recognize when there is a stressor or there might be one that could occur.

I ask myself how I’m going to deal with it. I remind myself that I can’t get stressed because I know what it’s going to do to me. That gentle reminder helps me a lot.

I also take time to avoid causing myself stress. For example, if I’m meeting friends for lunch, I don’t leave at the last minute. That way, I don’t get nervous about traffic or being late. I can give myself a 15-minute buffer, relax, take a leisurely walk to the restaurant, have an enjoyable lunch with my friends, and come home versus having a stressful time.

Things that you have control over, control them, because there are a lot of things in your life you don’t realize that you do actually have control over.

Get the Most Out of Treatment

Follow your medical professional’s instructions, regardless of how you feel. You may feel great, but you should not stop taking your medication unless your medical professional has said you are in remission and it’s OK to stop.

You can also be in remission while you’re still on medication, so that’s why it’s important to get your doctor’s blessing before quitting. If you stop on your own, you may have a flare-up.

Keep a log of any improvements or setbacks so that you can talk to your doctor about it and get the best treatment plan. Then you can give them details about what’s working and what’s not.

For instance, right now, I’ve been having pain in my foot and I didn’t think it was a big deal. But my doctor is extremely concerned, so I’m getting an MRI on my foot. This is a good example of something you should track. How long has it been hurting? Has it gotten worse? When did it get worse? Does anything make it feel worse? Better? Things like that. That helps your doctor treat you more effectively.

I always write a list of questions before I go into my medical professional’s office. That way I don’t forget anything. I write down the answers and follow-up questions while I’m there. I find that to be really useful.

It’s important to have a medical professional who suits you. That may mean shopping around if you find yours isn’t a good fit. If you don’t feel like you’re being treated well and listened to, go to another doctor if your health insurance allows.

Have a Backup Plan for Bad Days

I have a backup plan for everything because your symptoms can interrupt your daily life at any time. You can feel well in the morning, and by afternoon or evening, you could be feeling lousy.

I have a trip planned to Costa Rica, and since my medicine hasn’t really been working well, my doctor and I have a backup plan. I have one for work, too. I happen to have a great boss who is very supportive and encouraged me to get a medical accommodation.

Find support from other people with psoriatic arthritis or rheumatoid arthritis, which is very similar. I’m a member of both CreakyJoints.org and Bensfriends.org, and I highly recommend them both. I’ve met lots of people through these sites. When I’ve gone through flare-ups and I’ve been low and depressed, it helps to have people who understand.

I also get support from my friends who don’t have psoriatic arthritis. In the end, despite having lost friends over this disease, I feel like it’s worked out well for me. Now I have the greatest friends, both with and without psoriatic arthritis. I’m surrounded by understanding and supportive people.

By Carolyn Deming Glaviano, as told to Alexandra Benisek

I was diagnosed with multiple sclerosis on my birthday. I had some eye pain and went to my optometrist, who then told me I needed to see my ophthalmologist. After being in the eye doctor room for a few hours, and seeing many doctors, a resident told me they think I have MS. She suggested I walk to the emergency department and admit myself into the hospital for an MRI.

There was a moment when I was in shock. I kept thinking “no, really, I’m just here for eye pain.” I called my colleague, Cassie, to tell her the situation. She ended up bringing saltines, ginger ale, and almonds and stayed with me while I was admitted into the hospital. That day, she catapulted to this different status of friend, just by being such a wonderful person.

How MS Affected My Friendships

One of the things every individual with a chronic illness needs is another person to hear, to listen, and to discuss things with. My friend and roommate, Sarah, was with me at appointments, not only to be my advocate, but to hold witness to what was being said. Doctors usually want people to leave during a spinal tap, but Sarah didn’t leave. She held my hand and petted my hair during the procedure.

Through my diagnosis, I’ve learned what I need from my friends. For example, Cassie was not going to let me be alone at the hospital. It was a professional friendship prior to that. But we crossed over about 100 barriers that day, because I didn’t want to be alone and she rose to the occasion.

My other long-distance friend is very good with medical things and wanted updates. So, Sarah became a central point of focus for people in my life so that I didn’t have to update them. She connected everyone and answered questions.

But that’s just one side — the diagnosis and support side. Then there’s the physical limitations. As my disability has progressed, I’ve had changes in my walking, stamina, balance, and even my fatigue levels. Fatigue is so debilitating, and sometimes I have bad movement days, so I might have to cancel plans. Until you or someone close to you encounters this, you don’t realize how hard it is to get around.

My friends never make a big deal when I have to cancel plans. They don’t take it personally or make me feel bad. Because I’m already disappointed — I wanted to see them. It’s not me being flaky. It’s me having to make a physical determination of what I am capable of, and a cost-benefit analysis of what I need to do today, what I need to do tomorrow, and what I need to do for the rest of my week.

How MS Affected Me and My Family

I have an incredible family. But at first, I worried how my parents were handling it. The parent-child relationship did a massive swap. I thought I was going to be taking care of my parents as they got older, but that hasn’t happened. They’re still very much taking care of me.

I had to work a lot on communication. At first, I didn’t know how to convey the ways in which I needed my mom to help me. I wanted her to be a mind reader. She also didn’t know how to take hard information and know what to say right away. I wanted her to have an instantaneous and perfect reaction, but she needed time to think.

Now, we’re in a really great space. But that’s taken time. It’s so important to be open with communication. We had to come together to figure that out.

Even though my family is super supportive, I’ve still had to say, “please don’t say that to me,” or “this is how I need you to help me,” or ”can we do x instead of y?” That takes energy, effort, and is a learning curve.

How MS Affected My Marriage

My boyfriend, now husband, and I started dating long-distance. When I was diagnosed, we hadn’t been together that long. He was supposed to be in a wedding when I went into the hospital. He called up his buddy and said, “I can’t be there.” He changed his flight and came from Atlanta to Chicago to be with me.

He friended all of my friends on Facebook and did a “birthday redo,” since I had been diagnosed on my birthday. They bought alcohol and food and did a whole birthday do-over several days after I got out of the hospital. He was never scared of my diagnosis. I don’t know how I got so lucky. Because I know a lot of people would run the other direction, not knowing what the future would bring.

Today, I have mobility issues and we have many stories in our house. So, he’ll carry my glass of water, my book, and my phone so I can concentrate on getting up the stairs. I can’t walk our dog anymore, so he takes care of that.

We have had to shift what and how we do things. Now, we do a lot of check-ins. On some bad days, I’ve had to ask, “do you want to hear this?” or “are you in a headspace to hear this? If not, that’s OK.” I don’t feel like he’d be turning his back on me. Because his mental health and ability to support me also have to be OK.

I think this idea that your spouse is supposed to be everything puts too much the pressure on them, it’s unfair. On certain days, I have another person help, like a friend.

Talking to Others About MS

During previous jobs, I was not loud and proud about MS. I felt unsure if I wanted to acknowledge that I have, what is now considered, a disability. I know that people are not unbiased, so I was terrified to even self-identify.

In many cases, if you look fine, there’s also a stigma. Prior to my physical limitations, I had an invisible illness. I would wonder if I had to try to look sicker than I am to prove that I have MS. That’s a burden, especially in the workplace. So, I swung the other way. I’d act like everything was fine. My professional life and persona are very important to me, so my energy went to that. And then my recovery was on the weekend. But I realized it wasn’t fair that my job got all the good energy.

It’s a lot of therapy and a lot of talking to bosses. At every new job, my boss eventually knew about my MS. But it wasn’t off the bat. It was several months into that job that I told them.

When I talk about MS with others, I love using the phrase “dynamic disability.” I will communicate when it’s a good energy day or when it’s a bad mobility day. At my current job, I have a really understanding leadership team. If they’re going to have an in-person meeting, they give me the choice to come in or not. And that’s awesome.

But in past jobs, I’ve had some issues, like getting proper disability parking. There are mechanisms to help people with MS, but it’s not a seamless process, it’s not always easy to understand. But there are things you can do.

My distinct sound bite is, “If you don’t ask, you don’t get.” What’s the worst thing that can happen if someone says no? You still have the self-assurance of knowing that you advocated for yourself. That means your energy, your boundaries, your work-life balance, your health, your doctor, and the people in your life — those are choices that you have.

There are some magical people in this world who never need to be told how to help, but most people just want some direction. The support you get from work won’t be the same support from your family, or from your friends. But most people have the ability to offer something.

Psoriasis treatment has come a long way. New medications like biologics have helped more people achieve clearer skin.

 But everyone with psoriasis is different. What works for one person won’t always help someone else. A certain medication might clear your skin for you for a while, then stop working. Some may have side effects that you find bothersome. 

Women with psoriasis say it can take time and experimentation to find what works best for you. That might mean medications, lifestyle changes, or home remedies. It can also mean adopting a new mindset — to stress less, reach out for support, and practice self-acceptance.    

One Biologic After Another

Tami Seretti was diagnosed in 1996, when many doctors still treated psoriasis like a skin condition instead of an autoimmune disease. At the time, topicals — medications you apply to the skin — were the main treatment.

The first one she tried was a corticosteroid oil applied to the scalp.

“You had to put it in, wear a shower cap all night, and wash it out in the morning,” Seretti says. “It was messy. I ruined nightgowns and sheets. And it didn’t really work that well for me. It pulled the scales out, but it pulled my hair out with it.”

She also tried other corticosteroids and all kinds of greasy lotions.

Then she started on disease-modifying drugs. She’s tried many biologics, drugs that block the part of the immune system that cause those scaly plaques.

One worked well for her — for a while. “I was in total remission. But when it stopped working, it really stopped working,” she says. Two years ago, her doctor suggested she switch to her current medication.

“It started working in about 10 days, and it’s been working ever since. I went from 80% covered to 15% covered [in psoriasis].” She’s been able to grow her hair past her shoulders for the first time in her life.

Seretti also uses two topicals, a cream and a scalp solution. And she uses an ultraviolet B (UVB) light wand at home.

In addition, she finds relief from soaking in an Epsom salts bath. “It softens up all the scales and it relaxes me,” she says.

“Psoriasis-wise, I’m doing fantastic. I could not be happier,” Seretti says. “I don’t think twice anymore about wearing flip-flops, sleeveless tops, or shorts.”

She says she also doesn’t have to cancel social plans anymore because she’s too uncomfortable to get dressed. “This freedom is incredible.”

Medication and Stress Relief

A tiny patch of itchy skin on the back of her head was Melissa Withem-Voss’s first symptom. What she thought was stress turned out to be psoriasis, which her doctor diagnosed in early 1996.

She’s tried many medications over the years, including steroids, methotrexate, and even injections of a  compound containing gold.  Finally, she and her doctor found a biologic that worked for her. “After 21 years of not being 100% clear, that was the first thing that cleared me.”

But biologics can eventually stop working. That’s what happened to Withem-Voss after about 3 years on one medication. Now she’s on her 4th week of a different biologic drug. “So far, it is helping,” she says.

As a chef, Withem-Voss has experimented with diet, too. She finds that eliminating bread and sugar helps her skin. “I haven’t found that any one diet has ever solved it,” she says. “But I feel better.”

She also meditates for a half hour before bed each night to tame the stress that causes her psoriasis to flare up. “It keeps me calm. It keeps me relaxed,” she says.

Over time, she’s learned to live with her condition. “I used to hide. I used to cover myself,” she says. “I have come to accept it about 90%.”

Elimination Diet

When Jessica Lorion noticed tiny spots on her legs and stomach in 2011, she thought they were bedbug bites. She was an actor living in New York City, so bedbugs wouldn’t have been far-fetched. But when the spots didn’t go away, her doctor diagnosed her with psoriasis.

“I was covered from head to toe. From the top of my scalp all the way down to my feet,” she says. She tried a steroid ointment before going on a biologic drug. “After about 6 months, I was significantly clearing,” she says.

Eventually she was also diagnosed with psoriatic arthritis. Her doctor put her on the anti-rheumatic drug methotrexate, which helped with both conditions.

But in the back of her mind, Lorion was worried. She wanted to start a family, and methotrexate isn’t safe for a growing baby. Her rheumatologist told her she could go on a pregnancy-safe biologic, but “I was scared,” she says. “You hear these commercials with all these side effects.”

Lorion started to experiment with food. After doing some research, “I made the decision to go on an elimination diet, to make my body as strong and healthy from the inside out as possible,” she says.

For the first 30 days, she followed a strict regimen. No gluten, dairy, caffeine, processed foods, sugar, grains, or most oils. Then she slowly started reintroducing foods. Today, she still avoids gluten, dairy, artificial sweeteners, and processed foods.

She says the diet has helped her wean off most of her medications. “At this point, I’m at the lowest dose,” she says. “I just have a little bit [of psoriasis] on my elbows and heels, but it’s under control.”

She’s started a podcast, called Mamas in Training, to share her journey with an autoimmune disease and help other moms-to-be advocate for themselves.

“It’s my way of helping others and helping myself stay in a positive mindset,” she says.

Medication — and a Strong Support System

Being outdoorsy, Vickie Wilkerson mistook her first psoriasis patch for poison ivy. That was 18 years ago. Back then, topicals like coal tar were her main treatment option.

“In my opinion, the coal tars are the worst ever. The smell, the greasiness — it messed up your clothes. It was terrible,” she says.

The psoriasis eventually spread to so much of her body that her doctor put her on methotrexate. But the side effects were “horrible,” she says. “I’d be very nauseous. I couldn’t even try to lift a glass of water. I was so fatigued.”

Then she tried biologic after biologic. One cleared her hands but not the rest of her. Another worked for a year and a half, then stopped. A third helped her psoriasis, but she developed stomach problems while on it.

On her latest biologic, she says, her skin is almost completely clear. “In the 18 years I’ve been battling psoriasis, I’ve never once been clear. To finally be on something that is working is just amazing,” she says.

She also watches what she eats and listens to music to relax. And she credits a strong support system with helping her through the most difficult times. Her biggest sources of support are her husband, her children, and the people she’s met through the National Psoriasis Foundation.

“I turn to them when things are bad or I’m in a flare because they understand what I’m going through,” she says.

If you have psoriasis — or know someone who does — you’ve probably spotted the telltale flakes on your carpets, couches, car seats, and clothes.

“The outer layers of the skin grow much faster than normal,” says David Pariser, MD, professor of dermatology at Eastern Virginia Medical School. “As the layers peel off, that’s what makes all the scale.”

Psoriasis flakes look a lot like dandruff. Because they come from your scalp and body, they can get everywhere.

The flakes can be very embarrassing. It’s a part of the disease you can’t hide.

Over more than 4 decades of living with psoriasis, John Latella estimates he’s lost more than 300 pounds of scale. The flakes were a big issue when he had to travel for work.

“If I went out to dinner with somebody and reached across the table and brushed something, I always worried the scales would fall off,” he says.

At hotels, he’d wake up in the morning to find the bed full of flakes.

“I was embarrassed to leave it like that because I didn’t want the maid to have to clean it up.” He says using a moisturizer regularly in both the summer and winter helps keep his skin soft, supple, and less scaly.

Heavy flaking isn’t as common as it once was. Treatments like biologic drugs are available to control psoriasis.

“If you have so much flaking that it’s lying around the house, you should go back to your dermatologist,” says Carolyn Jacob, MD, founder and director of Chicago Cosmetic Surgery and Dermatology. “Biologic medications can free your skin of the inflammation, which causes the flaking in the first place. They’ve completely changed the entire way of treating the disease, and they allow people to have normal lives so they’re not vacuuming every day.”

It’s important to get inflammation under control, she says, not just to improve your skin, but also to prevent damage to your joints and blood vessels.

Latella says biologics worked for him, helping to reduce his scaling “to practically nothing.”

If you’re on a treatment but still dealing with flakes, there are some easy ways to tidy up.

1. Fire Up the Hoover

“Vacuum every other day,” Jacob suggests.

It’s the easiest way to clean up psoriasis flakes. It’s important, too, because scales can build up in carpets and attract bugs.

“Dry, flaking skin that comes off ends up being food for dust mites,” she says.

A hose with a rubber edge will pick up the smallest flakes. Buy a portable hand-held model for your car and travel. And if you get tired of pushing the vacuum, a robotic one can do the work for you.

2. Go Deep

Psoriasis flakes can go deeper into your carpets than your vacuum can reach. When Latella tore up the wall-to-wall carpeting in his home, he was surprised by what he found.

“The scales had worked their way down through the fibers of the carpet. It was just powder underneath,” he says.

Have your carpets deep cleaned every 6 months to pick up the scales your vacuum cleaner misses.

3. Sweep Them Away

Hardwood or linoleum floors make it easier to clean up flakes. You simply sweep them up with a broom or brush. A broom with softer bristles may make it easier to pick up the scales, Latella says.

4. Scrape Them Off

Latella found his own solution for flakes that covered the bed while he slept.

“I made a hard card out of plastic. In the morning, I’d scrape the scales into a pile and throw it out.” Any hard-edged surface will help you collect the flakes more easily.

5. Roll Them Off

Scalp psoriasis can dust the shoulders of your shirt, much like dandruff. A lint roller or brush is an easy way to remove flakes that fall on your clothes.

“These scales are not sticky,” Jacob says. “They’re not going to stick to your clothing.”

She also suggests wearing light-colored clothes to hide any flakes that do fall.

6. Go Long

If your arms and legs shed a lot, wear long pants and long-sleeved shirts with buttoned cuffs when you go out. Your clothes will catch the flakes before they fall.

7. Wash Them Off

Wash your sheets and clothes more often to get rid of the scale buildup, Jacob suggests. Use a gentle detergent that won’t irritate your skin.

8. Filter Them Out

Install an air filter in your home to trap psoriasis particles. This will keep the flakes from floating in the air. Or use a vacuum cleaner with a built-in filter.