Advice

How To Job Hunt When You’re Disabled

Finding a job when you're chronically ill can be a challenge. So we spoke to an expert who has placed hundreds of disabled jobseekers for tips.

When my chronic illness started in the the winter of 2012, I tried to shrug off my symptoms. Desperate to keep my job at a small public relations firm, I ignored my growing fatigue and unexplained nausea and forced myself out of bed every morning… until I collapsed. I was hospitalized, and I eventually learned my illness was never going to go away – but it would take several more weeks before I would accept I couldn’t work like I had before. My illness required creative thinking.

I’ve had difficulty working full-time since. Nor am I alone: in the United States, only 22% of people with disabilities are employed, while only 4% of them were not in the market for work. Given that a billion people are disabled worldwide, that’s a huge pool of talent being ignored by employers, who can be reticent to hire people with unpredictable chronic illnesses, or limited capacities in other ways.

So what can a chronically ill or disabled jobseeker do to increase their chances of being employed?

Workbridge, a national recruitment agency based in New Zealand, works with both employers and jobseekers to help people with physical or mental health conditions find the right fit. They fill more than 3,500 positions a year, and are “inundated with employers” looking to advertise and work with them, according to Employment Consultant Nicola Zielinski.

Zielinski, who’s been working in this sector for fifteen years both in New Zealand and the United Kingdom, says that Workbridge places 90% of the people they work with. But when you’re chronically ill or disabled,

“It’s very rare that there’s not a job out there for someone,” says Zielinski, who says Workbridge places 90% of the people who come to them.  “I get asked what sort of sectors we work in, and I say: anything. People with disabilities can do all types of jobs.” You just need to maximize your chances.

Be Patient, And Think Outside The Box

Finding the right job can take time. Zielinski encourages jobseekers to find a way to connect with others first, like volunteering.

“It’s easy to look at it and see the end goal of paid employment, far away,” But you can break it down into steps. Volunteering or very part-time work can test your skills, give you new ones, and give a sense of routine and purpose that many people need.”

Paul Hoverd, a 50-year-old stroke sufferer, is a perfect example. Paul had extensive experience in many fields, including as police officer and a teacher. Feeling unable to do that sort of role following his stroke, he went through six months of job rejections. What finally got his foot in the door was when Workbridge discovered Paul’s love of animals and photography, and suggested a first step: volunteering with the local SPCA (Society for the Prevention of Cruelty to Animals).

“Opportunity could look different to what you thought.”

The unpaid gig gave Paul the opportunity to rebuild confidence, get back into his routine post-stroke, and practice his pup photography. Soon, he was working at a canine kennel, and is now trying to take his work to a new level by attaining his Bachelor of Visual Arts and Design.

Making a plan is great, but be prepared to deviate from it, Zielinski says. “Opportunity could look different to what you thought.”

Be Upfront With Your Prospective Employers

Disclosing the nature of your disability early on means both you and your employer know your abilities and skill levels. Many companies are eager to hire qualified people with chronic illnesses and disabilities, but they are afraid of uncertainty. Being crystal clear at the outset about what your capabilities are can go a long way to removing that uncertainty from the hiring equation.

“Often people have been living with their condition for a long time, so they know exactly what their abilities are,” says Zielinski. But a lot of times, what they can or can’t do because of their illness is the elephant in the room, which no one wants to directly address. It’s understandable that a job-seeker who is feeling sensitive about their limitations might want to avoid the subject, but it’s best to just tackle the issue head on.

“It’s important to establish those so everyone feels informed. Recently I worked with someone who has Cerebral Palsy, whose speech is affected. Other than that his disability is invisible, so someone hearing that can make assumptions. He’s learned to let people know what’s going on.”

Remember: You’re Worth Hiring. 

While it’s important to let people know if you have any limitations, Zielinski says it’s still critical to keep the focus of the interview on what you can do, not what you can’t. And a big part of that is being positive.

“People will be keen to work with you if you’re positive and committed, and clear about your limitations so they know all the information from the start,” she says. “Attitude is the number one key ingredient to getting a job. Most people can learn how to do a job, but what goes a long way is someone’s willingness, honesty and openness.”

“[Getting a job is] much more about ability than disability.”

Many disabled people can understandably feel defeated by the jobseeking process even before it starts. But it’s important to go in believing in yourself, and remember that you are worth hiring. Because if you’re not going to advocate for yourself as the best person for the job, who will?

At the end of the day, most employers want the most qualified and confident person for a job. Illness or disability doesn’t necessarily factor into that. “It’s much more about ability than disability,” Zielinski says.

Employment Is A Two-Way Street

Zielinski’s advice gels with my own experience. Though I never went back to my old job full-time, I have, in the years since, been able to reclaim a lot of my sense of purpose through volunteering my PR skills to a local women’s organization, as well as freelance writing, which lets me work around my illness and set a lot of my own deadlines.

And as for community: it’s just as key as Zielinski suggested. Isolation is an issue for many people with chronic illness and disabilities. Luckily for us, we live in a world where we can get connected even if we can’t leave the house. And we can get work that way too.

The statistics don’t lie. Disability is an ever-growing challenge, and people living with it are vastly underrepresented in the workforce. But all of us have something to offer. And our best efforts should be met by employers who recognize just how much talent is going untapped.

Advice

Ask Ada: Social Media Is Triggering My Grief At Being Chronically Ill

Ada helps a son come to terms with his relationship with his mother after her stroke. Plus, how to deal with jealousy and grief after PCOS.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Can I Find Closure With My Mother After Her Stroke?

Dear Ada —

I’m an only child, with a mother in a nursing home after a severe stroke, which diminished her greatly. Before her stroke, my mother was a very difficult woman whom I loved very much, but spent a lot of my time in conflict with, especially after my father died. She would constantly accuse me of not doing enough or spending enough time with her, and blame me for everything bad that happened to her, even though I was doing everything I could to help her.

I tried a lot of things over the years to try to have a better relationship with Mom, because I knew I was all she had. Nothing worked though, and I finally just decided that nothing would improve our relationship: my mother was a malignant narcissist, and there was nothing about that I could change.

But then the stroke happened. Since then, my mother is a totally different person. Although her cognition is severely impaired and she rarely speaks, she is much sweeter now than she once was. She also seems much more grateful for the things I do for her, and more likely to tell me I’m a good son, and that she loves me.

You’d think I’d be grateful for this, but instead, I’m conflicted. I keep on asking myself: Could I have misjudged my mother all these years? Is it only now that I’m seeing the sweet person she is at heart? But then I think to myself, no, it’s a personality change due to the brain damage.  But that just makes me feel even worse, because the truth is, I prefer Mom this way.

Can you offer any advice on how to come to terms with the toxic history my mother and I share, post-stroke? Thanks.

 Guilty Son

Let me start by saying something which may be obvious to you: your mother isn’t the same person anymore.  She can’t address any of the previous toxicity in your relationship.  The stroke your mother had permanently altered her personality, and if you are going to rebuild your relationship with her, it has to be with the person she is now, not the person she was.

Looking forward means accepting that, for all intents and purposes, the stroke has given you a new mother. One who is loving and grateful for your presence. It also means understanding that you won’t find closure to the past you experienced.

The stroke has given you a new mother. One who is loving and grateful for your presence. It also means understanding that you won’t find closure to the past you experienced.

Of course, this all seems easier said than done though, doesn’t it? If you’re looking for instructions on how to move forward start here: write a letter to the former version of your mother. Tell her exactly how you feel. Let her know how she let you down, held you back, or made your life unbearable. Get everything out there and on the page. Then, once you’re confident you’ve let loose, destroy your letter. Burn it. Rip it up. Shred it. You have this opportunity to let your voice be heard.

As for whether you misjudged your mother, it’s important to remember that people are multifaceted. Just because someone is full of bile doesn’t mean there isn’t sweetness there; just because someone resents their child doesn’t mean they aren’t also grateful for them. Traumatic brain injuries like a stroke have a way of reorganizing those facets, and sometimes stripping them away. Instead of doubting yourself because the gentler facets of your mother’s personality are now more obvious, try to practice gratitude instead.

 

Photo by Lisa Johnson from Burst

After PCOS, Facebook Posts About My Friends’ Kids Are Making Me Sad

Dear Ada,

I have polycystic ovary syndrome (PCOS), and the scope of my condition means my partner and I can’t conceive. This alone has been a lot to come to terms with, but it’s made worse by the fact that all of my friends have had children in the past two years. Our lives are on different tracks now; I feel isolated from the emotional understanding they all seem to share.

I have good friends. They were hugely supportive of me when I learned pregnancy wasn’t an option for us. But lately, I’ve been feeling bitterness and resentment toward their lives, and this club they’re all a part of. I’ve been withdrawn, and have shut off all social media because their posts cause me pain.

Should I step away? My friends would likely respond graciously if I told them my feelings, but I don’t know if I can let go of the way I feel.

— Lonely Laura

Oh, my heart hurts for you. Not only has PCOS stripped you from the opportunity to have children, but it is also threatening to rob you of your friendships.

Because you’re still mourning, it’s important to protect yourself from things that trigger you. If you know that social media is one of them — like it is for so many people — continue to avoid it.

And get out there and make new friends who understand what you’re experiencing. There are so many support groups, locally and online, with women and couples who are also unable to conceive. Open up. Be vulnerable. Build a tribe who gets you.

Open up. Be vulnerable. Build a tribe who gets you.

But should you also avoid your friends at the same time?

No. Absolutely not.

The best friendships are flexible, allowing each of you to cling more or retreat slightly from the relationship as life happens around you. At this moment, you may not be able to fully immerse yourself in your relationships, but that doesn’t mean you should abandon them.

For friendships to really work, they require open communication and honesty. You know your friends want to support you, but you’re not giving them an opportunity to do so, and you need support right now, not distance.

Avoidance isn’t going to help you move through this. What will help is the love and support of your friends, both old and new.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: How Can I Help My Husband With Erectile Dysfunction?

This week, Ada helps a couple address a sensitive marital issue with patience and understanding. Plus: are peanut allergies really worth taking seriously? (Yes.)

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Can I Help My Husband With Erectile Dysfunction?

Dear Ada,

My husband and I are having problems with intimacy. He used to be the person to initiate sex, but now I find that I’m the one encouraging it–and he rarely wants to participate. When we do have sex, he seems to have trouble getting or keeping an erection. At first I started to worry that he just wasn’t interested in me anymore, but lately I’ve noticed that whenever this happens, he seems more and more frustrated. Now I’m wondering if this could actually be a medical issue, like erectile dysfunction. I want him to talk to his doctor about it, but I can tell he’s embarrassed to even talk about it with me. I’m not sure how to give him the confidence and support he needs to set up an appointment. What should I do?

Sincerely, Ellen R.

Hi Ellen,

While it’s understandable to worry that you may be the cause of his condition, know that you aren’t to blame. There’s more to arousal than simple attraction — hormones, emotions, blood vessels, and the brain all play a factor. When something is off with one or more of those areas, the potential for erectile dysfunction is high.

It’s also something that’s extremely common. Various research studies report about 50% of men over the age of 40 have some issues with erectile dysfunctions. Though as prevalent as it may be, it frequently goes untreated, as some individuals feel uncomfortable discussing sexual health issues with their doctors–just like you’re concerned about.

Because you’re still interested in being intimate, it’s important for you to broach the conversation with him when he’s available to talk and not likely to be distracted. Before doing so, do some research into the condition that you can share with him. Let him know that you’d love to nurture the sexual part of your relationship, and you hope he’ll talk with his physician. Then, let him sit with the information, and make the decision on his own, making sure he knows you’ll be there with him every step of the way.

It’s like anything else about being in a partnership: sometimes it’s easy, and sometimes you have to work on it.

If the anxiety is holding him back, know that there are lifestyle changes that may help. Exercise, maintaining a healthy weight, and quitting smoking have shown to greatly improve ED problems. In addition, dealing with any psychological issues, like stress, anxiety, or depression may help with both interest in sex and the ability to perform.

There’s another factor here to consider too. Performance anxiety can be self-perpetuating. Every man will fail to achieve an erection when he wants to once in his life, but depending on how much it bothers him, it might kick off a cycle of erectile dysfunction, even when there’s nothing otherwise wrong.

All of which is to say that what your husband needs is your love, compassion, good humor, and support, and encourage him to see a doctor if the problem persists. Learning to deal with sexual dysfunction as a couple is, to a greater or lesser extent, part of every successful relationship. It’s like anything else about being in a partnership: sometimes it’s easy, and sometimes you have to work on it.

Photo by Sarah Pflug from Burst

My Kid’s Classmates Are Driving Me Nuts

Dear Ada,

My son is in kindergarten. At the beginning of the year, he got sent home with a letter letting us know the class was a peanut-free zone, so I made sure not to make any PB&Js and check labels. However, after a couple months, my son told me that some of the other students were bringing in peanut butter crackers and other snacks that I probably wouldn’t have sent him with. What gives? I’ll admit to not knowing much about allergies. Is it okay to send my son to school with nut snacks so long as he doesn’t sit near the allergic child?

– Worried Mom in MA

Hi Worried Mom,

Trust your gut. Don’t send your kid to school with food that contains peanuts.

Please trust your gut, and don’t send any food to school that contains peanuts.

If your son’s school deemed his class a peanut-free zone, then there is a child with access to that classroom who is allergic to peanuts, and exposure to it could cause a severe—potentially fatal—reaction.

Let’s put it this way. If a kid in that class goes into anaphylactic shock, and you’ve been sending your kids in with peanuts, is the fact that everyone was ignoring that child’s needs really going to soothe your conscience?

While it’s difficult to estimate how many children suffer with food allergies, Centers for Disease Control and Prevention (CDC) estimate that four to six percent of U.S. children are affected, and that number is growing.

Unless you have a child with a food allergy, it’s difficult to understand the severity of a reaction.

The National Institute of Allergy and Infectious Diseases reports that “allergic reactions to foods can range from mild gastrointestinal symptoms or skin rashes to severe reactions that can be fatal.” In fact, according to the Journal of Allergy and Clinical Immunology, “Allergy to peanuts and tree nuts is the leading cause of fatal allergic reactions in the United States.”

There’s no snack special enough to risk making another child suffer with painful rashes, anaphylaxis, or any other reaction.

There’s no snack special enough to risk making another child suffer with painful rashes, anaphylaxis, or any other reaction.

If students are bringing peanut butter snacks to school, my best guess is the teacher isn’t aware that it’s happening. Take a moment today and send her an email or call her at school to let her know what your son told you.

This is also an excellent opportunity to teach your child to be an advocate for others. Food Allergy Research and Education (FARE) reports that “about one-third of kids with food allergies report that they have been bullied because of their allergies.” Encourage him to support his classmate, and speak up if he notices anyone not taking the allergy seriously.

School should be a safe environment for children to learn and grow. To make that happen, we all need to do our part to keep the children safe, and ensuring no peanut products enter the classroom is one way you can help.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: Where’s My Chronic Illness Crystal Ball?

How can you fit the demands of chronic illness into a busy schedule? Also: what are some good books to read your kids about disability?

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Can I Fit Chronic Illness Into My Schedule?

Dear Ada,

I’m no stranger to chronic health conditions that require daily maintenance and attention. Over the years I’ve devised a work schedule with equal parts rest and productivity that truly works for me. On the well-managed days, I meet my goals with a smile and feel content with life. Then come the curve balls. Do you have any suggestions for handling the unpredictable nature of chronic illness? For example, on Christmas morning rheumatoid arthritis joint pain left my hands weak and limp, erythema multiforme (EM) lesions erupted in my mouth causing pain when eating or talking and a healthy dose of fatigue topped it all off, just hours before hosting a holiday lunch. Maybe I just need a crystal ball?

~ Melancholy in the Midwest

Dear Melancholy,

I wish that I could give you a crystal ball. Short of that, though, all anyone can do to manage the unpredictable nature of chronic illness is this: focus on being proactive, and manage your stress.

Because you’ve adapted a work schedule that fits around your health conditions, my guess is you’re familiar with my first suggestion. Being proactive with every possible task in your life gives you the freedom to take downtime when unexpected symptoms and side effects derail your days. This means kicking to the curb any “Why do today what can be put off till tomorrow” instincts you might have, and developing habits that allow you to address everything immediately, so nothing is lingering in your mind or holding you back from resting as much as possible if pain or illness suddenly strikes. Carpe diem, in other words.

There’s another reason it’s important to get things off your plate as soon as you can: long to-do lists stress us out, and according to the National Center for Health Research (NCHR) says that stress actually increases the likelihood of becoming ill. So when you’re chronically ill and you’re behind on what needs to be done, there’s a knock-on effect: you get stressed out, which makes it more likely that you’ll get sick, falling further behind, which will just stress you out more, and so on. 

Which brings us to stress management. There’s no one-size-fits-all approach to calming yourself down when stressed out: exercise, meditation, yoga, sleep, hanging out with friends, journaling, swimming, painting, Netflix-and-chilling are all equally valid methods of calming yourself when stress creeps in. The important thing is to find what works for you, and then make sure to find time for it every day… even (or perhaps especially) when you feel like you’re falling behind what you need to do in other areas of your life, or coming on stressful times, like holidays. Remember: self-care is the most important responsibility any of us have, because from it, everything else follows.

There’s no such thing as crystal balls, and none of us can see the future. All we can do is do our best to take care of ourselves in the here-and-now.

Photo by Matthew Henry from Burst

What Books Should I Read My Kids So They Can Understand Disability?

Dear Ada,

I love to read and I want to instill that same love in my children. However, I can’t seem to find any good books that showcase a wide range of children from different ethnicities to abilities. My niece is reliant on a wheelchair and my nephew has autism and ADHD. I’d love to find kids books with characters of different abilities so my children can see characters similar to their family members on the pages. The books don’t have to be about health issues or disability per say, but I’d love to have my children read those too. Any ideas?

~ Mom Loves To Read

Hello Mom,

Congratulations on being so intentional in your parenting! Reading is just so important for children, not just so they can see and identify with characters like themselves, but also so they can be exposed to the vast and beautiful spectrum of human diversity. Here are four books I’d particularly recommend as a jumping-off point, because they feature characters similar to your niece and nephew.

In both it’s Hard to be a Verb and My Mouth is a Volcano, written by Julia Cook and illustrated by Carrie Hartman, the main character, Louis, has ADHD. Because of that, he often can’t control his impulses very well, helping kids gain a more empathetic understanding of what kids living with ADHD are going through. 

Hello Goodbye Dog, written by Maria Gianferrari and illustrated by Patrice Barton, is a great book featuring a young girl in a wheelchair, which focuses less on her abilities, than on her dog, who can’t seem to stay away from her while she’s at school. It’s a lovely introduction not just to what life is like for kids with mobility-impairments, but also introduces the concept of service animals to young readers.

Since We’re Friends, written by Celeste Shally and illustrated David Harrington, gives neurotypical children a chance to understand their peers with autism. A surprising number of children’s books with autistic characters focus on those character’s efforts to be “normal.” What’s great about Since We’re Friends is that it flips the script, showing ways in which a neurotypical kid adjusts his behavior to make his autistic friend more comfortable. 

Looking for more? There’s no shortage of suggestions online for children’s books talking about chronic illness or disability. The important thing is to keep reading to your kids, since it’s been proven to improve empathy skills and emotional intelligence. Keep exposing your children to lots of good books, and I promise you, they’ll grow up to be inclusive humans.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: Should I Protect My Son From His Chronically Ill Best Friend?

This week, Ada helps a mother teach her son about illness in the face of a friend's cancer. Plus: advice on not feeling bad about your fitness lifestyle!

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Stop Feeling Jealous Of My Friends’ More Active Lifestyles?

Dear Ada,

I have been sadly triggered by feelings of exercise inadequacy. Eighty-year-old friends brag on their expensive far flung daily classes in faraway places.

I don’t drive but I walk with my cane now as far as I can daily. Carcinoid syndrome causes neuropathy and balance problems and all the dancing and yoga poses in the world cannot bring me peace this year.

What does is still doing housework, walking to local thrift stores and perambulating to shop with my husband in all the long corridors of all our local malls. Love the trees and kids with boundless energy. Thanks for letting me share.

Carolyn

Carolyn,

What you’re experiencing is something that people of all ages go through — the comparison trap. The people in your life boast about their experiences, and you hold these stories like a mirror to your own. Know that there’s no one “right” way to move your body, so long as you move it. Their fancy yoga and dancing classes aren’t any better than your walking and light activity.

While you may feel inadequate on occasion, I want to point out how positive your overall attitude is. You know your limitations, and yet you’ve found activities to keep you active without pushing yourself into pain or discomfort. And not only are you getting out there and getting exercise, but you’re noticing and cherishing all the joy around you — all while spending quality time with the people you love the most. This is something to celebrate.

Know that there’s no one “right” way to move your body, so long as you move it. Their fancy yoga and dancing classes aren’t any better than your walking and light activity.

Your friends may have no clue that their stories are making you feel inadequate. The next time you catch yourself in this situation, invite them into your world instead. Start the conversation by saying, “I wish I were able to participate in dance classes like you do, but my Carcinoid syndrome causes neuropathy and balance problems for me. I spend my exercise time walking, and found the perfect thrift shop. Would you like to walk there with me one day for a little retail therapy?” I’ll bet they’ll be honored to receive the invitation.

One more thing. If you’re looking for ways to conquer these brief moments of feeling less-than, consider repeating affirmations to yourself. It doesn’t matter whether you write them yourself or borrow someone else’s words. You can memorize them or keep a few written ones nearby to read in the moments you need a pick me up. Affirm yourself while looking in a mirror for some extra effectiveness.

To get you started, here are a few affirmations from Louise Hay that are quick to repeat and simple to remember.

“My happy thoughts help create my healthy body.”

“I listen with love to my body’s messages.”

“My body appreciates how I take care of it.”

Remind yourself that you are perfect exactly as you are, and you’ll never have to live up to someone else’s experiences again.

Photo by Samantha Hurley from Burst

Should I Protect My Son From Watching His Friend Get Sick?

Dear Ada —

My son is eight, and one of his friends was just diagnosed with leukemia, and will have to start treatment in the New Year. My son doesn’t know this, but my sister (his aunt) died of leukemia when she was around the same age, which was extremely traumatizing to me as a little girl. Because of this, I want to distance my son from his friend, so he doesn’t have to go through the same kind of pain, but my friends say that’s selfish, and my husband thinks it would send the wrong message. What should I do? How do I protect my son from seeing his friend get sick… and possibly die?

From,

Sharon S.

Sharon,

It’s obvious that you’re a great mom who loves her son and wants to protect him from all the hardships of the world. That being said, your husband and friends are right. Sheltering your son from sickness and death isn’t a good idea. At some point in his life, he’s going to experience both with people that he loves, and it’s best for him to learn and prepare now while he has you to lean on.

Allowing your son to stay close to his friend with leukemia is good for many reasons. It teaches your child compassion and gives him the skills to learn how to support others in their times of need. It introduces both illness and death in a manner that you can control — as much as it’s possible to control these kinds of things — based on the amount of access he has to his friend.

Allowing your son to stay close to his friend with leukemia teaches your child compassion and gives him the skills to learn how to support others in their times of need.

It also benefits his friend, who will definitely lose touch with his social circle in a time he needs support the most. While you may be the only parent with a sibling who passed away from the same illness, you aren’t the only parent considering distancing your son from his friend — and that child certainly could use one now.

At eight years old, your son is developmentally able to understand the concept of death, and he’s likely been exposed to it in movies, video games, and television shows, even if he’s been fortunate to avoid it in his circle of family and friends. However, you don’t want his introduction to morbidity to be what pop culture teaches him. You have the opportunity to guide him, especially with your intimate experience of having gone through this and losing your sister at a young age.

While that moment in your life may have been traumatizing, my hope is that you’ll find some healing in being able to talk about it with your son. It will help him understand this experience better and also make him feel like he knows his aunt better.

While your sister’s death may have been traumatizing, my hope is that you’ll find some healing in being able to talk about it with your son.

One more thing to consider is that your son’s friend’s illness will naturally keep the children away from each other. The child will be immunocompromised or may feel too sick from treatment to take any visitors. Encourage your son to write letters to his friend. Send funny cards. Take pictures of all of the child’s favorite places and activities put the picture in a small scrapbook they can page through when they’re feeling homesick in the hospital. Oh, and when the child is feeling pretty good — spoil them by dropping by with his favorite treat.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice

Ask Ada: How Do I Have The Perfect Chronically Ill Christmas?

This week, Ada gives advice on how to deal with Christmas when you're newly diagnosed, and how to navigate the New Year's fitness resolutions of your friends when you struggle with an eating disorder.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

Advice On Making My First Chronically Ill Christmas Great?

Dear Ada – This year, after months of fatigue, aching joints, and mysterious rashes, I got an early Christmas present: My doctor told me I have lupus. Since then, when I’m not dealing with symptoms, I’ve been super depressed: most days, it’s a win if I can even get out of bed before nightfall. But Christmas is a big deal in my family, and I’m feeling a lot of pressure to get it together for the holidays. What can I do? I’m in constant pain and have zero energy to get out of bed, let alone go out and shop or do traditional Christmas activities like trim the tree or make gingerbread houses–but my family has been great helping me through this year, and I don’t want to let them down. How can I give them a great Christmas when I’m feeling like this?

Thanks, Lupus the Red-Rashed Reindeer

Reindeer, while this certainly isn’t the type of Christmas present you were hoping for, I’m so glad to hear that after months of suffering you were able to get a diagnosis, so you can begin to treat and manage your symptoms.

Know that it’s OK to feel out of the holiday spirit. There’s a lot happening in your life, and unfortunately, there’s no way to turn on a happy switch just because it’s the holidays.

You say your family has been “great” helping you through this year, which tells me they will probably understand what you’re going through. Sit down with your loved ones—or do a video call if they aren’t close—and be honest. Tell them how much you appreciate their support, but that you’re really floundering right now. Let them know you need some time to rest your body and process this recent news. By sharing your needs with your loved ones and taking care of yourself, you’re actually giving them a great gift: The self-care you need to be present with them throughout the year.

The ultimate gift any person in your family can get this holiday is another year of your love. So take care of yourself this Christmas, and don’t do anything you don’t have the strength to do.

But it sounds like you really want to be able to share in the Christmas spirit with your family, even in this difficult time. So consider adapting some holiday activities to match your current abilities. Maybe, instead of trimming the Christmas tree with your family, you’re the official videographer, capturing memories to look back at with fondness for years to come. Or if you have young children at home, have your partner or another family member lead the gingerbread-house making this year. Everyone can compete against each other as you rest, and then you can judge whose house wins (Pro tip: Make a different award for each child, such as “best use of candy” and “best theme.”)

The ultimate gift any person in your family can get this holiday is another year of your love. So take care of yourself this Christmas, and don’t do anything you don’t have the strength to do.

Remember: Your loved ones want nothing more than your health and happiness. Talking with them or inviting them over to your home will maintain that community you’ve felt with your family all year long–through Christmas and into the future.

How Do I Get Through The Holidays With Anorexia?

Dear Ada,

I am currently in recovery from anorexia. In recovery, we’re asked to do things that run counter to societal norms: cut down on exercise, gain weight, enjoy the occasional dessert. The process leaves me steeped in guilt and shame.

A handful of my friends are actively working on their diets and exercise plans, and share all their fitness schedules and results with me on a regular basis. None of them know I am struggling with an eating disorder. I am very happy for them, and at the same time, I find these conversations triggering. I want to support my friends and maintain my privacy without losing my mind. What can I say to help cut back on the body talk?

Love, Ella

Ella — The world seems to have a hyper-obsession with food and fitness, which, as someone with anorexia, you understand all too well. At their best, conversations about food and fitness can drive conversations and build connections between people, but if you’re struggling with body dysphoria, these conversations can have the opposite effect, and trigger unhealthy thoughts and behaviors. And with the New Year just around the corner, weight-loss resolutions are sure to spill across dinner tables and over the group texts you and your friends share.

Which brings us to your current situation. Your friends don’t understand that sharing their weight loss resolutions with you is triggering. How could they? If you’ve been managing your eating disorder privately, your friends won’t know you’re struggling. In their eyes, they probably see a woman who’s inspiring to them: a friend who put forth an effort to lose weight and achieved results. It’s an incorrect assumption, but perhaps a natural one in a culture which glorifies fitness and weight loss: they aren’t seeing your internal struggle with an eating disorder.

None of which is to say you should tell them you struggle with anorexia if you don’t feel comfortable doing so. You have a right to your privacy. So here are some other options.

Say that there are many different healthy body types, and that you’re uncomfortable with the way our society assumes that a woman can not be beautiful or healthy if they aren’t thin.

First, you could try being honest with them about how you feel, without going into detail about your anorexia. Say that there are many different healthy body types, and that you’re uncomfortable with the way our society assumes that a woman can not be beautiful or healthy if they aren’t thin. Say something like: “Let’s make a resolution that we’ll only share positive thoughts about our bodies with each other, okay?” And if that doesn’t work, there’s always the good ol’ standby of aggressively changing the topic.

That all said, ultimately, the only way your friends are really going to understand what you’re going through is if you let them in. You say you’re struggling with guilt and shame in your recovery. It might feel hard to be vulnerable and open up—it requires a leap of faith–but vulnerabilty and honesty is what ultimately separates real friendships from mere acquaintanceship.

This isn’t to say you need to open up to everyone, but consider telling a few of your closest loved ones. Take a look at the people who are triggering you the most right now, and ask yourself if their friendship is worth investing more into. If it is, consider telling them the truth about what you’re going through, so that you both can be better friends to one another? Or are you comfortable where your friendship already is, in which case, maybe you should distance yourself for awhile if they keep on bringing up triggering subjects.

Either way, whether by opening up to your friends or by redirecting the conversation toward more productive, body-positive topics, be proud: you are acting as an agent of change. Not only will these efforts help bolster your own well-being, but you’ll be setting the stage for your friends to think differently about body talk, too. Soon, they may stop conflating weight loss with health, and encouraging those around them to find more interesting challenges than step counts and lost pounds.

Let’s be real: We’re all a little tired of putting our bodies on display as the topic du jour. This might just be the refreshment (and resolution) your friends need as they head into the New Year.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice Explainers

Ask Ada: ‘When Should I Tell A Date I’m Disabled?’

In our new advice column, Ada explains the best way to reveal an invisible disability when dating, and helps a husband understand his wife's decision to undergo a life-changing surgical procedure.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Tell My Date About My Invisible Disability?

“Dear Ada—Reentering the dating world with an invisible disability is difficult. I’ve had mixed results: scaring people off by revealing it too early on or “being manipulative” by not disclosing it for what they perceived as a long time (~2 months, casually seeing each other). Any advice on navigating this situation?” – Sincerely, Brooke

Dating is one decision after another: What should you wear? Where should you go? How long should you wait to follow up for a second date? An invisible disability forces an additional question on you: When should you mention your diagnosis?

I wish I could tell you that there was a formula: for example, if you’re set up with your date through a friend, disclose your disability on the second date, but if you meet online, wait until at least the fifth. But unfortunately, there’s not, just like there’s no clear formula in most dating dilemmas.

I can, however, tell you that you’re wasting your time by keeping the information to yourself. This isn’t to say you should introduce yourself by saying something like: “Hi, I’m Emily and I suffer from Endometriosis!” But bringing up the topic early helps you weed the good dates from the bad ones.

Disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of.

I’d recommend disclosing your disability as soon as you’re sure that you’d like to continue getting to know the person you’re out with. You’re not determining if you want to marry them, just whether they’re worth the disclosure.

That answers the ‘when’ but what about the ‘how’? How should you reveal an invisible disability to your date?

Well, the truth is that disability shouldn’t be some shameful secret. It’s a regular part of your life, and that means the best way to disclose it is for it to come up naturally. So if, for example, you have Crohn’s disease, a good time to disclose that would be after you described your food allergies to the server. You could then follow-up by mentioning to your date how much you’ve learned about food since your diagnosis, then let them ask questions, guiding the conversation along when need be.

The bottom line is that disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of. Presenting your truth early and earnestly allows your date to process the news with understanding and compassion. If they don’t, then kick ‘em to the curb and try again.

My Wife Wants To Undergo A Double Mastectomy. Help!

Dear Ada—Recently, my wife of three years discovered that she had the BRCAI mutation, which makes it statistically much more likely that she will get breast cancer. Her mother and grandmother died of breast cancer, so my wife wants to get a preventive double mastectomy. But I’m not so sure. I’ve tried to talk to my wife about it, but she’s adamant there’s nothing to talk about: even though she doesn’t have cancer yet, she’s made up her mind, and it doesn’t matter what I say.

Suffice to say, I’m struggling to accept her decision. It’s not that I’ll love her any less without breasts, and obviously, I don’t want to lose her to cancer. I also know that it’s her body, and ultimately, that makes it her decision. But choosing to go through such an extreme surgical procedure without really asking me how I feel about it hurts, and makes me concerned about our future. What other extreme measures might she choose without talking to me first?

What should I do? What is the right way for us to approach this?” – Sincerely, Sam

It seems as if your issue is less about the double mastectomy and more about the fact that your wife made this major decision on her own and isn’t listening to your concerns. It also sounds like you think she came to this conclusion too suddenly.

But I think the truth is that your wife has probably been weighing this decision for years. When your wife’s grandmother and mother died of breast cancer, she probably began researching her options, including mastectomy. When it was confirmed that he was a carrier of the BRCA1 mutation, your wife’s decision became clear. It isn’t that she’s taking this decision lightly, it’s that she’s had a lot more time to come to terms with the emotional and physical transformation that will follow removing her breasts.

This isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.

Meanwhile, you’re only processing all of this for the first time. You don’t have the intimate knowledge she’s gained about breast cancer over the years, and because of that, you’re having a hard time grasping her train of thought. It’s not that she is trying to shut you out of the decision-making process, it’s that you are both literally at different stages of processing the news, without realizing where the other person is at.

While your wife is ultimately the only person who can make a decision about her own body, you both still need to try to come to a common understanding as to why she’s making this choice. So ask her to educate you, and explain how how she came to her decision. Tell her you love her, and accept her decision, but be honest about feeling left out, and concerned about what a failure to communicate productively about major life-decisions might mean in the future.

And then, once she explains? Respect her decision, and support her however you can. Because like you said, this isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Advice Explainers Mental Health

How To Go To Therapy

Think you don't need therapy? Think again: therapy is for everyone. But there's a right way to do it, and a wrong way.

A lot of people think therapy is only for people who have psychological problems.

Let’s put that stigma to rest. Everyone can benefit from therapy. It’s like going to the gym: going to therapy helps you live a happier, healthier, and more productive life, even if it seems like a drag at the start.


“The biggest misconception about therapy is that you need to have a problem or that there is something wrong with you in order for you to go,” explains Justyna Wawrzonek,  a licensed social worker at the West Hartford Holistic Counseling Center in Connecticut. “That is not what therapy is about. Therapy is basically learning to come home to yourself and be as close to yourself as you can be.”

So even if you think you don’t need a therapist, you should consider making an appointment to see one. It’s an investment into your own wellness every bit as important as eating right, exercising, or the myriad other things people do to improve their quality of life.

But how do you start? How do you find a therapist? And how do you make the most of it?

How to Find a Therapist

First things first. Before you begin the search for a therapist, check with your insurance company.  If you choose to work with a therapist in-network, your insurance company may only cover a certain amount of sessions per year. If you select a therapist who is out-of-network, it is essential to understand your deductible as well as what can and cannot be submitted for out-of-network reimbursement.

Your insurance company’s list of eligible therapists can be overwhelming, so review their specialties. As an adult, you can cross off any therapist that specializes in children or adolescents. Depending on your age, you can either seek out or cross off those who serve geriatric patients. If you are confident that you do not suffer from a specific condition—such as an eating disorder, substance abuse, anxiety, or depression—you can eliminate those specialists as well. However, it’s important to recognize that while you think you understand why you are seeking therapy, once in therapy you may discover there is a different reason entirely.

It’s important to recognize that while you think you understand why you are seeking therapy, once in therapy you may discover there is a different reason entirely.

Once you’ve narrowed down your list, ask your primary care provider for recommendations. You can also check with friends and family if you feel comfortable. Next, rule out deterrents such as location, cost, or lack of appointment flexibility. Then set up initial interviews and ask a series of questions about their approach. This will help you determine if the therapist seems genuine and empathic, if they listen well, and if they ask good questions. During this interview, pay attention to how you two interact: some patients, for example, prefer their therapists to be blunt, while others want their therapists to be more affirming.

What to Expect from Therapy

“In an ongoing therapeutic relationship, you will develop a stronger bond with a therapist,” explains Brian Cassmassi, an adult psychiatrist. “You may not become best friends, but there is definitely a friendlier and easy rapport. Plus, it’s a lot easier to talk about what happened with your days and for the therapist to recall things that may have happened in your past that can clarify a current situation.”

As you become more comfortable with your therapist and continue to learn about yourself, you will develop a growing awareness of the patterns in your life, and how these patterns influence the way you feel and behave. This is what therapy is ultimately about: to gain a deeper understanding of the way everything in your life ties it together.

“Therapy should be challenging and hard—that’s when you know that you are growing.”

“You are the expert of your life,” Wawrzonek explains. “You know where you need to go, what you need to do, and what you want out of life. But you may not know exactly how to get there. It’s the therapist’s job to walk along with the client and help them sort through all the different roadblocks. It is not the therapist’s job to take the client’s hand and lead them somewhere. The client is always in the driver’s seat, and the therapist is using their best judgment as to what may be helpful for their client.”

“Therapy should be challenging and hard—that’s when you know that you are growing,” Wawrzonek continues. “But it also has to have a component of feeling safe, nurturing, and supportive. Without it being hard, safe and supportive, there is something that is missing. All of those components are important.”

What Not to Do in Therapy

Believe it or not, self-sabotage can be common in therapy.

Some of these examples of self-sabotage are obvious. It should go without saying that if you are chronically late or miss the majority of your appointments, you aren’t getting the full benefits of therapy.

But keeping secrets and not being totally honest will also sabotage your therapeutic goals. If your therapist isn’t working with the truth, it’s hard for them to understand what is happening in your life. Therapists aren’t there to judge you or your actions, regardless of their personal beliefs, so don’t be afraid to share.

Your therapist can’t change the world, but they can help you to change yourself.

“If there is a topic that is way too sensitive for you to discuss with your therapist at the moment, but you know it’s important, it may be helpful just to say, ‘there was this rape that happened when I was a teenager, but don’t touch that right now,’” Cassmassi recommends. “During a later session, if you say you were uncomfortable with your boss touching you a certain way last night, the therapist may ask if you want to talk about the rape now or if you still want to talk about your boss.”

Playing the blame game is just as bad. Instead of blaming others for a problem, your therapy should focus on the things you can control. Your therapist can’t change the world, but they can help you to change yourself.

Don’t Be Afraid To Switch Therapists

It’s common to develop a strong connection with your therapist over the years.  Because of this, it may be hard to recognize and accept that you are no longer progressing with your therapist. But if therapy has become a weekly obligation and you are no longer growing, then it may be time for a change.

Remember, therapy is for you, and you should always put yourself first in this relationship. When it is time for a switch, don’t worry about how the therapist will handle the news.

“By the time that somebody is a practicing therapist or psychiatrist, they have gone through thousands of hours of supervision and training,” Cassmassi explains. “While you may think you will hurt our feelings if you leave us, that has been hammered out of us from our training. We are usually well-trained to adapt, and you aren’t going to completely break our hearts if you want to switch.”

Remember: Therapy Is For Everyone

When people haven’t gone to therapy before, they tend to believe it’s only something you do when something is “wrong” with you. But there’s nothing wrong at all with wanting to gain a better understanding of your world, and the tools that therapy teaches us to use—like mindfulness, or coping skills–have broad applications in everything from your career to your love life. .

“One of the things I often hear is, ‘why didn’t someone tell me this in elementary school so that I had this defense skill in my repertoire when I became an adult?’” Cassmassi recalls. “When people finally go to therapy as an adult, they feel like they wish they had at least known a simple trick to help them get through their teenage years. Patients also say, ‘I wish I had that under my belt when I was going through all of this. Maybe those skills would have helped me with some of the minor things, and I would have felt slightly less anxious.’”

“The most important relationship in your life is the one you have with yourself.”

And, it provides a safe place for you to learn and grow under the guidance of a professional who has your best interest in mind.

“The most important relationship in your life is the one you have with yourself,” says Wawrzonek. “And when we can nurture and foster and grow and have a healthy relationship with ourselves, that is going to mirror every other relationship that we have in the world: work, family, and friends. The deeper you get to be yourself, be okay with yourself, accept yourself, love yourself, and be your own best friend, that greatly benefits every area of your life.”

Advice Chronic Pain Explainers

How To Create A Chronic Pain Journal (And Why You Should Start One)

To beat your pain, you need to understand your pain. That's why spending just 5 minutes a day writing can be your most effective tool in fighting chronic pain.

I considered creating a pain journal for quite some time before actually starting one.

Before that, I always just pushed through my pain, and I suppose a part of me just hoped that it would eventually go away. After 19 years, though, what got me to start my first pain journal was the sudden realization about how little I actually knew about my pain when meeting my new rheumatologist. She asked me questions, while I was able to describe my symptoms very well, I knew shockingly little about the myriad other factors that could be influencing my pain, from diet to exercise and beyond. Then and there, I decided I need to know more precisely what was going on with my body so that I could collaborate better with my medical team.

Since I started my chronic pain journal, I’ve found the process helpful in other ways. I’m more aware of my pain in the moment, which helps me contextualize it better, as well as better appreciate the moments I’m not in pain. It has motivated me to take better care of myself by exercising or drinking more water, because I can quantify that I am less likely to be in severe pain if I do these things. Finally, having a written record of my pain allows me to better work with my doctor to aid in diagnosis as well as pain management, by allowing me to track exactly how well my medications are working.

If you, like me, are in chronic pain, one of the best things you can do is start tracking it. Here are some of my tips for getting started with a pain journal of your own.

If you, like me, are in chronic pain, one of the best things you can do is start tracking it.

What You Need

A pen and paper. Any notebook will do. If you are proficient at Word or Excel, you can also make pages that you can print out and place wherever you will do your regular recording. It doesn’t matter if you’re using a Moleskine or a stack of looseleaf paper: the important thing is to create a journal that you can take anywhere and that you’re comfortable using.

What You’ll Track

The following are the basic questions that any journal needs to be able to quantifiably track:

What hurts? The part or parts of your body that are currently hurting, identified as specifically as possible. While I experience pain in many parts of my body, I chose to track the worst three locations: my hands, feet, and neck. I suggest starting with three or less to make it easier to stay motivated.

When does it hurt? Here, you want to list where you were, what time it was, and what you might have been doing when the pain started.

How bad is the pain? You need a standardized measurement for pain so that you can see patterns over time. You could choose a very simple scale like “no/yes” or “none/some/a lot.” I chose to use the standard pain scale of 0-10 because I want to demonstrate more nuance than a shorter scale would allow. It is important to note that “no pain” is just as important to register as “a lot of pain,” because this will help you consider what is different about that day why the pain is gone.

A close-up look at my chronic pain journal.

How Often You Should Track?

At least daily. Habit research tells us that we are more likely to complete a task if done daily than when we skip days. But more is better. In my case, because I know that I have a rhythm to my pain throughout the day, I decided to track it several times per day, morning, afternoon, and night (although sometimes I fill in all of those points at the same time before bed).

Other Data To Track

Once you’ve gotten used to tracking your pain for a month or two in a very basic journal, you can start customizing your journal to your experience.

For example, I added a “comments” section under my pain scale, as well as more data points, measuring: activity level (measured from 0-3), exercise, medications or treatments I was currently trying, and hydration (measured by poor/average/good)

Activity Level — measured on a scale from 0-3 (3 being the highest)

Exercise – type/duration (for me, this is differentiated from activity level because it is focused time set aside for exercise and usually includes stretching)

Medications – type

Treatment – type

Hydration – measured by poor/average/good

Everyone’s pain is different, so your journal will likely be different from mine. Keep experimenting with what works for you, and what information you find useful!

Everyone’s pain is different, so your journal will likely be different from mine. Keep experimenting.

Stick With It!

A chronic pain journal is only useful if you use it consistently, but consistency can be hard to establish. I suggest you put your journal in a regular place, and tie your habit of logging your pain for the day with another habit you’ve already established: for example, if you take medications at a particular time every day, put your journal near your medicine and commit to tracking your pain at the same time as you take your pills.

Conclusion

Pain is exhausting, and sometimes the idea of adding one more thing to your to-do list when you are worn down feels devastating. But a chronic pain journal is a small commitment that anyone can make to try to get to the bottom of their pain for once and all. Don’t be hard on yourself if you miss a day or two: it’ll be okay, just pick it back up when you can. Some data is always going to be better than no data, so anything you can write down will help in the broader battle against pain. Think of your journal as one small thing you can do to try to understand your pain and use it as motivation to try new ways to lessen its burden.

Advice Cancer Explainers

How To Deal With Chemotherapy: Everything You Need To Know

So you, or someone you know, is getting chemotherapy. Here's what you need to know.

Chemotherapy. It’s not a feel-good word. It conjures up images of pale, sickly faces with shaved heads. But there’s a lot more to this cancer-killing drug regimen than its most talked about side effects. Because after you go through chemotherapy, it changes you in all sorts of ways… and while some of those changes can be unpleasant, others can be extremely positive and life-affirming.

Because nothing beats chatting with someone who can share their first-hand knowledge, Folks spoke to two cancer survivors about their experiences: Allison St. Pierre, who was diagnosed with breast cancer just after her 52nd birthday in 2014, and Eric Fishman, who was 35-years-old when he received a diagnosis of testicular cancer in 2017. Whether you’re a newly diagnosed patient looking at treatments, a friend or family member of someone with cancer, or just curious about what geting chemo is like, here’s what you need to know about chemotherapy.

Every Chemo Treatment Is Different

For starters, chemotherapy is not a one-size-fits-all drug–it’s actually a mix of chemicals (a drug cocktail, if you will) that are combined together based on the diagnosis, stage of cancer, and best course of care for each person. Although an oncologist will recommend the mix and intensity of treatment, the patient is the one who makes the final decision on exactly how aggressive they want treatment to be.

Some regiments of chemo can be extremely intense: Eric had three rounds of treatment, each consisting of a week of daily treatments followed by two weeks mostly off except a treatment on Tuesday. Others can be relatively laid back: Allison received one day of treatment a month with a month off between treatments, which is more common.

Almost Everyone Gets A Port

No, not the dessert wine. Because chemotherapy is such a potent mix of chemicals, inserting it directly into a small vein could dissolve the vein. So before chemotherapy begins, patients undergo a brief outpatient procedure to have a thin tube, called a catheter, placed directly into a large vein, often near the heart. The port is then connected to the catheter internally and has an external opening for chemotherapy delivery. Instead of a nurse continually pricking a patient to find a large, working vein, a special needle is placed directly into the port and then connected to an IV holding the personalized chemotherapy cocktail. Ports can also be used to draw blood.

There are exceptions, of course. Depending on the type of cancer and treatment used, some patients do receive chemotherapy through an IV, or get injections, or even take capsules orally. But for most patients, you’re looking at getting some hardware installed.

Every person’s chemo is different. Creative Commons photo: Beverly Yuen Thompson

What A “Typical” Treatment Is Like

For those who receive their chemotherapy drugs intravenously, they must visit a lab for each treatment. Before chemotherapy begins, a nurse will weigh the patient and take a blood sample. If their blood count is too low, treatment may be delayed until their immune system strengthens. For those with ports or a catheter, the line must be cleared before the new chemotherapy treatment is given. This can leave a bad taste in the mouth, so many patients bring mints or a strongly-flavored drink to avert the taste.

The amount of time it takes for the chemotherapy to drip through the IV and into the body can vary. Allison was typically done in two hours, while Eric needed three. Most patients will pack a “chemo bag” full of items that will provide them with comfort and help pass the time. While each bag is personal, some common items can include a large water bottle, a jacket and/or blanket, books, and electronic devices (with headphones!) to listen to music or watch movies.

Patients May Lose More Than Just Their Hair

Chemotherapy doesn’t only eliminate cancerous cells, it’s designed to kill all fast-growing cells. So not only do you lose the hair on your head, you can also lose all your body hair… and when it grows back, it may, at first, be very different than before. For example, formerly coarse hair may grow back baby fine, and once wooly legs may be almost bare. Some people even lose the nails on their fingers, or experience skin discoloration by developing splotches that look like sunspots. And while for most, these changes are temporary, some people can end up permanently changed by chemo.

What’s the trick to getting through these changes? Alison says: “Take charge!”

“When you have cancer, you feel you like you don’t have any control,” Allison explains. “My daughter and I made a party out of shaving my head. It was long, so she chopped it in stages to see what it looked like. I even had a mohawk at one point!” It can even be fun to accessorize around a newly bald head: for example, by trying out wigs with cool new hairstyles, or embracing a range of fun scarves and hats.ys to exert a bit of control.

When you have cancer, you feel you like you don’t have any control…Take charge!

Chemotherapy Will Change What You Eat

Chemotherapy causes nausea and vomiting, leading to weight loss, but that’s not all. It also changes your taste buds. Lasting up to five days after treatment, everything Allison ate had a distinct metallic flavor; Eric, on the other hand, completely lost his ability to taste after treatment. Both are common side effects from chemotherapy.

In addition, because of nausea and possible mouth sores, “heavy” foods (like burgers, pizza, or steak), sodas and sweets are often unappealing to chemotherapy patients. Many will stick to a diet of bland foods, like mashed potatoes, oatmeal, and crackers.  Luckily, taste buds often return to normal in between treatments, and once chemotherapy is complete, food will taste like food again.

Finally, when you undergo chemotherapy, you need to be really careful about where you’re buying your food. Since outbreaks of salmonella and E.coli are on the rise, patients may now be advised to avoid fresh, raw produce, which could prove deadly to a person who cannot fight off bacteria. Say so long to the farmer’s market, at least until treatment is done.

Your Life Still Continues Normally During Chemo

Most chemotherapy plans involve periods of treatment, followed by periods of relative normalcy, where no chemotherapy is had. During treatment periods, the symptoms can keep patients homebound, but in those weeks between, most patients resume their “normal” lives as much as possible.  In Allison’s “two good weeks” between rounds, she worked at her local community theater, shopped at the grocery store, enjoyed meals out with friends and went to the movies. She even remembers the satisfaction of having enough energy to clean her kitchen.

Chemotherapy Can Change Your Personality And Your Politics

For Allison, going through chemotherapy resulted in a complete mind shift. She was raised to be polite, not speak out, and to put others first. But chemotherapy made her realize that maybe she needed to spend more time advocating for herself, and speaking up when things were wrong. “Cancer completely upended my life and made me outspoken,” she says. Why? It all had to do with the feeling of being helpless during the negative side effects of treatment, and not wanting to feel that way in her day-to-day life. “I started looking at the big picture and began to view things differently. I’m a Southern girl and was taught not to talk about politics, but now I’m speaking up.”

Chemotherapy Also Changes Friendships And Provides Opportunities For New Ones

Chemotherapy can, weirdly enough, be a good time to bond with your friends, or even make new friendships.

For Eric, friends took turns accompanying him to chemotherapy treatments, and helped support his wife and children. One buddy in particular stands out. “My friend’s dad had recently died of cancer,” he recalls. “While I was going through chemotherapy, he called often to check in on me: he called more than anyone else.  We’ve become much closer now. He’s never been a mushy guy, but now he’s much mushier towards me. Even though the treatments are complete and I no longer have cancer, he still calls me often to check in. And now, it’s not just to ask how I’m feeling. Before, I was usually the one who called him, but now he calls me much more.”

Allison also made numerous new friends during her chemotherapy treatments. And not all of those friends were local. While she did attend some support group meetings, the women she met mostly older, many of Allison’s closest friends were made through online support forums for fellow cancer patients.

Staying positive and making friends is important to make it through chemo. Creative Commons photo: Komen Austin

Attitude Is Everything

Both Allison and Eric stressed that positive thinking and staying away from undue negativity was the major thing that brought them through what they call “the hell of chemotherapy.”

For Allison, taking a “media fast” was very important. Instead of watching or reading the news, she chose to read the Bible, write in her journal, walk in nature, participate in yoga classes for cancer patient, and join support groups.

Eric approached it differently. He kept his distance from negative friends and avoided as many conversations about cancer as possible. At chemotherapy treatments, he and friends would while away the time by watching funny movies together. (In fact, one time, Eric was laughing so uproariously during treatment that a woman next to him asked if he’d gotten extra drugs in his chemo cocktail.)

The walkaway from all this? If you’re a chemo patient, do whatever it takes to feel good about the world during this time; if you’re the friend of a patient, follow their lead, and be as upbeat as possible.

There Is

 A Light At The End Of The Tunnel

It might feel like chemo never ends, but it does. And life does get back to normal, eventually, even if it can take a long time.

When he received an all-clear from his oncologist, Eric says that he still didn’t feel “fully normal” partly because he still looked sick. It wasn’t until months later, when his eyebrows grew back, that he started feeling like he was really better.

Allison’s recovery was faster.  Starting just a few weeks after her last treatment, she began to see new hair, which she photographed weekly as a reminder of the progress. For her, this served as proof that she was recovering, even though it seemed slow. She created an electronic photo album called “Hair,” and as soon as she felt it was long enough to publicly display, she donated her wigs to a local cancer organization.

When your chemo ends, there can be a tendency to feel a certain degree of survivor’s guilt: to ask yourself, why did you make it, when so many others don’t? To this, Alison says that we should all remember a song from one of her favorite musicals, Hamilton.

“There’s a line in a song sung by Aaron Burr called ‘Wait For It,'” she says. “It goes, ‘If there’s a reason I’m still alive when so many have died, I’m willing to wait for it.’ I don’t know why I’m still here while others are not, but we have to focus on the positive and hang on to that.”

Creative Commons photo at top by North Carolina National Guard.