Forecasting the weather and life with IBD: What this meteorologist has to say

On the last day of 8th grade most kids are anxiously awaiting summer and moving onto high school, but for Candace Monacelli, that wasn’t the case. Instead, June 7th, 2007, she was diagnosed with Crohn’s disease at age 14.

As you can imagine, a lot has transpired since that monumental day. Candace now works as a morning meteorologist and reporter in Grand Rapids at WXMI-TV. She’s been at her current station for five years and has worked in the TV business for seven. This week she shares how Crohn’s has impacted her life but didn’t rob her of her hopes and dreams of working in TV news.

When it comes to going after your dreams and following your career aspirations, I see a lot of Candace in myself. We recently connected on Instagram and realized the parallels of our experience. Despite my Crohn’s diagnosis, I went on to work in TV news 3 months after finding out I had Crohn’s. I worked on morning shows for 7 years, she’s a morning meteorologist. We both do/did what we could to be the bubbly/happy on-air morning gals, while facing major battles and pain internally. We both encountered serious hospitalizations and bounced back to be on camera shortly thereafter. Being on steroids is hard enough…going on camera while on steroids and being judged by keyboard warriors and unkind strangers is a whole different story.

A walk down memory lane

My family and I had never heard of Crohn’s disease before and knew nothing about it or what my life would look like moving forward. I was sick for months prior to my diagnosis. My parents and I learned along the way, but my mom was my right-hand lady at every doctor’s appointment trying to figure out my illness. My parents were just so happy to have a name and a cause to me being so sick, they just described it as my stomach not being normal and we would figure this all out together. Then, I was put on steroids which resulted in weight gain and being bullied.”

Aside from hurtful words from her peers and juggling life as a teen with doctor appointments and colonoscopies, Candace says her disease at the time was well-managed with 6mp. When she moved onto college, she dealt with the challenge of wanting to live life like a typical student. By the time she was ready to enter the real world she not only graduated from college but also onto biologics (Humira).

Life in the TV spotlight

While in high school Candace discovered she loved public speaking and visited a local television station—she was hooked. Since she was already a decade into her patient journey, she didn’t second guess going after her dream of working in TV news as a meteorologist and reporter.

“Everyone thinks of Crohn’s as a pooping disease and while it is so much more than that, it is still a factor of the disease. The hardest part of my job is the limited time or access to a bathroom. Either I am covering something in the field with no restroom nearby or I have two minutes during a commercial break to hurry to the bathroom and be ready to go on air again. There’s been some interesting behind the scenes moments, but luckily, I am open with my crew and choose to be lighthearted about the bathroom aspect.”

Over the years, Candace has learned how to read her body and know when she can’t push through or make it on air.

“When the light goes on, it’s showtime. No matter how I am feeling… there’s been many days where I feel terrible but must put on a smile because I look perfectly healthy and it’s my job to come off that way. Being in the public eye with IBD can be pretty taxing some days.”

Juggling surgeries, abscesses, and fistulas

Up until this story—Candace has not spoken openly about her struggles with abscesses and fistulas. As a public facing person, discussing this private and often taboo topic is something that takes a lot of guts to be open about.

“Abscesses and fistulas make you feel so broken and constantly worried that if someone finds out the truth, they will instantly think you are the dirtiest person on this Earth. My palms are sweating, and I feel like I could puke, knowing strangers will now know this about me. But I am sharing in hopes to help that one person that is feeling just as alone as I do somedays.”

Even after five surgeries, Candace still has problems with abscesses and fistulas and somedays are better than others with numerous new challenges in her life.

“Sitting for a long time is now my own personal Olympic sport because it’s painful some days. I used to consider myself a runner, but that is now off the table for me, and my bathroom breaks are different. It’s been a scary learning curve trying to figure out how to handle something so foreign, that is now very much a part of every aspect of my daily life.”

Candace joined specific Facebook groups for her condition, as she desperately searched for others going through the same reality. More than anything else her family and friends are really what get her through.

“Every single person close to me has helped me know I am not alone and helps me get through difficult days, whether it’s a simple ‘how are you feeling?’… or crying with me on the bathroom floor.”

Going back on air after surgery

The first surgery to treat her abscesses and fistulas was an emergency and was unexpected. Candace was back on air four days after being discharged from the hospital.

“It sounds just as crazy as it was, but I am a stubborn Italian and never let Crohn’s win, so I somehow went back to work. My parents and boyfriend (now husband) weren’t happy with me, but I insisted on returning to the job I love. I remember having to practice getting in the car and making sure I could handle driving around my neighborhood the day before, since I leave for work at 2 in the morning.”

Candace remembers waking up that day, knowing what she just went through, and what it felt like to go back on camera in front of thousands of people who had no clue what she was enduring.

“I remember talking to myself on the ride to work thinking “what are you doing Candace you are a mess.” That first day back was mentally very hard to smile and pretend I felt like a million dollars when I did not. No one wants to watch the “sick” meteorologist on air so I couldn’t be that girl. Behind the scenes was an interesting hot mess as I had to put a blanket down to lay on the floor to work or just take a break since I couldn’t sit – I had to lay down at work for a month or more after each surgery.”

Candace learned her lesson and she didn’t rush her recovery after more recent surgeries.

“I found that allowing myself to heal and rest is not letting Crohn’s win but doing what is best and needed for myself in that moment. The stubborn Italian in me still struggles with giving myself time and grace, so it’s a work in progress.”

Being an open book with viewers and the community

Candace’s viewers know she has Crohn’s disease. She decided to openly share her experience with IBD to spread awareness and help make a difference.

“If I can share my story and experiences to reach one person and make them not feel so alone, then it’s one thousand percent worth it to me. I’ve also covered and shared numerous stories of IBD warriors within my community and get media coverage for all the Crohn’s and Colitis foundation events every year. The more awareness the better and I am blessed with a perfect platform to help make that possible.”

Advice for fellow IBD warriors

Candace has this advice for anyone worried about their futures—whether it’s a parent with a child who has IBD, or someone diagnosed at an early age.

“Where there is a will, there’s a way. Everyone has a cross to carry in life and our cross just happens to be IBD. In a weird, twisted way, this disease makes you strong enough to conquer whatever you put your mind to. We see people with IBD be professional sports players and movie stars, to everyone in between, including little old me… every IBD warrior can do whatever they dream to be one day. We are warriors fighting a battle every day, whether it’s big or small. Even when you yourself or someone you care for is sick or having a tough day, we need to know better days will happen again – just like the weather it can’t always rain forever…. You will feel better one day.”

I asked Candace what she would tell her younger self if she could go back to when she was diagnosed in eighth grade. Here’s what she said:

IBD will challenge you more than you can ever imagine but will also make you into the strong person you love. The life God gave you is tough, but it’s nothing he knew you couldn’t handle. It’s a battle you won’t ever lose. One day you will get everything you prayed for, even through everything Crohn’s throws your way.”

Candace is in remission in terms of her colon, but her rectum is still problematic and causing active disease. She gets Remicade infusions and avoids eating too much dairy, spicy foods, and salads. Candace drinks one cup of mushroom coffee most days and eats a mostly plant-based/Mediterranean diet.

Finding love with IBD

Candace met her husband on Match while working in her current TV market. She says they fell in love fast, and the rest is history!

“We moved in together, he proposed, and we had to postpone our wedding because of COVID. Now, we’re finally married and have a new house and a puppy. Life is good! My husband is the most loving and caring man helping me through all things Crohn’s. He is a saint straight from the heavens being right there by my side through everything. He has even spent one of his birthdays with me in the hospital for a surgery. He pushes me when I’m in a hole and feeling sorry for myself to help me realize my worth and remember that Crohn’s doesn’t completely define me.”

Connect with Candace

Instagram: @CandaceM_wx

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Working with IBD: Tips for a Successful Career

Work life balance takes on a whole new meaning when you have chronic illness. Molly Dunham-Friel can attest to that. Diagnosed in 2012 with ulcerative colitis, one year after receiving her undergraduate degree, Molly was forced to begin her professional career with unexpected titles she was just getting accustomed to—IBD and IBS. Molly remains just as ambitious and aspirational as she was prior to her diagnosis, but undoubtedly has experienced common roadblocks that come along with living with chronic health conditions.  While the career detours were not always welcome, the experiences Molly has had over the last nine years blossomed into finding what she is truly passionate about.

This week on Light’s Camera Crohn’s we take a close look at having IBD in the workplace, whether you work in an office or at home.

Quite the Go-Getter

While IBD is unpredictable, one constant in Molly’s life has always been her go-getter attitude. She tells me she’s been known to work multiple jobs since the age of 15.

“I am not very good at slowing down and I get frustrated when anything gets in my way, including being chronically ill. The one professional aspiration that I have always held is my drive to help people in need, the marginalized, the forgotten, the invisible, the ones who truly need my help.”

Since her ulcerative colitis and IBS diagnoses, Molly has worked full-time, while often holding additional part-time jobs. At one point she was working five jobs, simply to pay for her healthcare costs! Molly says life got more complicated and extremely overwhelming once she turned 26 and could no longer be on her parents’ medical insurance

“It was stressful and defeating because now I had added pressure to hold a job that provided me with affordable medical insurance to get the care I need as a chronic illness patient. IBD is extremely expensive to manage due to the medication, procedures, doctors’ visits, labs, you name it, it costs a lot. This felt heavy as a 26-year-old still learning how the world works and how I wanted to make the world a better place.”

Molly has had to leave jobs she enjoyed to go to companies with better benefits, which also came with less satisfaction.

“I have been stuck in jobs solely because I needed the cost controlling benefits the organization offered. I have had to say no or not apply to amazing jobs and organizations because the benefits would not cover my chronic illness needs enough where I could afford it. I feel like my health insurance needs as a chronic illness warrior trump my career aspirations, which feels suffocating and leaves me frustrated. I want to do what brings me joy and not just what brings me healthcare coverage.”

New purpose, new goals

After starting her blog, Better Bellies by Molly, beginning to volunteer with the Crohn’s & Colitis Foundation, and connecting with amazing warriors via social media. Molly realized her passion for helping to support the IBD community.

“My goal is to support, educate and empower chronic illness patients, particularly those living with IBD and IBS, so they don’t feel alone, like I did upon my diagnosis. I am also passionate about helping patients feel empowered to advocate for their health. I haven’t figured out how I will turn this into my career, but blogging and social media is a great start!”

Advice for those with chronic illness nervous about working

There is no sugar coating how hard and demanding it is to work full-time on top of the full-time job of managing chronic illness life. Here is Molly’s advice:

  • No job is worth your health. Put your health first whenever you can.
  • Know your rights. IBD and IBS are both conditions listed in the American Disability Act. If you are discriminated against due to your IBD or IBS, speak to someone you trust to fight for your rights. Depending on the organization, employees with disabilities can submit formal paperwork to receive reasonable accommodation, which is any modification or adjustment to a job. Like most things with chronic illness, there is a lot of paperwork involved, but reasonable accommodation is one mechanism to look into in addition to going to HR and asking what other accommodations your employer offers.
  • Who you work for matters. Having an empathetic and compassionate boss and supervisor makes working full-time while chronically ill more enjoyable.
  • Disclose what you wish to disclose when you wish to disclose it. I currently find disclosing my disability status/medical conditions helpful so that my leadership can support me, but it took me six years to get to this level of confidence speaking about my chronic illness life. Give yourself time and grace. I have not always been met with compassion and understanding so follow your intuition and share when you feel ready. I have only held two jobs in the last 10 years where my diagnosis was discussed prior to being hired and onboarded and one of those times it was because my diagnosis related directly to the work and the other was because my advocate work made its way onto my professional resume and after sharing my story online and growing comfortable talking about it.
  • The more flexibility the better! Ask about work life balance ahead of time. It is especially hard to work an 8:30-5 job which a chronic illness because work hours directly conflict with when doctors’ offices are open and operating. Most medical facilities outside of hospitals are not open for routine or diagnostic care on nights and weekends so the more flexibility your work will allow, the better.
  • Follow your passion, even if you must detour. I have had so many career detours due to my health insurance needs and flare-ups, but I have never stopped pursing my passion for helping others, even if that meant starting something of my own outside of my full-time work.
  • Working full time is hard, working fulltime while chronically ill is harder. Juggling work alongside appointments, sick leave, flexible scheduling, and economical health benefits can be overwhelming. These can be hard to find, but as chronic illness patients we are no stranger to doing hard things.

The new perception of working from home

The pandemic has helped companies, organizations, agencies, managers, supervisors, and senior leaders recognize that so much can be accomplished and in many instances that more can be accomplished, by working from home, teleworking more often, and commuting less. It’s not surprising that companies that have pivoted into a more flexible scheduling system will be more likely to retain top talent, including us chronic illness warriors!

“I wish it didn’t take a global pandemic to teach the world that we can work from anywhere, that we can be trusted as employees and that yes more flexibility might actually make us better employees. I think the perception of working from home has drastically shifted and is no longer viewed as an “easy way out” or something that will lead to employee’s “slacking off.” However, I have realized that while many companies and leaders have made this shift, not everyone has and that there is still much room for improvement.”

Working from home benefits patients with IBD and IBS by:

  • Being able to use our own bathrooms, with our preferred toilet paper and easy access. No longer fearing if the bathroom is occupied when the moment hits.
  • Not commuting lowers stress and gives us back the time it takes to travel back and forth each day.
  • Being able to work while feeling ill is easier when in the comfort of your own home, with your blankets, heating pad and supplies to help keep your body as comfortable as possible, while also getting work done. Many times, this would not be possible in an office setting.
  • Leaving the house can be anxiety producing for those with IBD and IBS due to the often very sudden need to use the restroom. Being able to work from home can diminish that fear.
  • Having access and privacy for administering medications throughout the workday is easier done at home.
  • Allowing flexibility to work around doctor appointments, infusions, lab work, procedures, you name it.

Breaching the subject with a boss or superior

Much like the stress surrounding when to tell a love interest about your health conditions, knowing when to the tell a boss you have IBD can be worrisome as well.

Here are Molly’s tips for approaching the subject:

  • Unless an emergency is forcing you to disclose your condition, I recommend sharing when you feel comfortable to do so.
  • Begin by asking if they know what your condition is “Have you ever heard of IBD? Do you know what IBD is?”
  • Based on their answer, follow-up with education and explaining how your condition impacts your life.
  • A good supervisor will ask you how they can support you. Be prepared to ask them for what you need which might be a flexible schedule or understanding that your illness is invisible, and you are in fact a motivated and loyal employee.
  • Sharing is not for everyone, but you might be surprised who else at work is dealing with a chronic illness, bosses included.

IBD Wins in the Working World

*Having bosses who support you personally and professionally lowers stress which supports optimizing mental and physical health.

*Finding ways to unwind—whether it’s exercising, taking Epsom salt baths, or going to therapy.

*Use each professional experience to help shed light on where your passions lie. You’re constantly learning what you like, what you don’t like, and each experience helps to inform the direction your career will take.

*Celebrate all the wins—large and small.

*Be mindful of how your employer handles a hospitalization, flare up, or surgery. It’s telling to see how your work family supports you or doesn’t in times of need. Your health should always be the top priority.

*While chronic illness may hijack where you thought you would be in your career, it may help dictate what you enjoy doing.

“As chronically ill workers we need to voice our needs and push for systems to change so that we can break down barriers, make working more accessible to the chronic illness community, and to obtain and retain talented chronic illness employees.”

Key Takeaways

  • It won’t be easy, but you can do it!
  • Feel empowered to stand up for yourself.
  • You deserve to be accommodated in the workplace and it is not a weakness to have a disability or need special needs.
  • Chronically ill people belong in the workforce.
  • You can still achieve your dreams after diagnosis, they might just look different.
  • Your career path might not go according to plan, and that is ok.
  • Follow your passion and heart whenever possible.
  • Working full time isn’t the answer for everyone.
  • Give yourself grace.
  • No job is worth your health.
  • If a job is making you sicker due to stress, toxic environment, or lack of flexibility, work towards changing that situation.
  • Your aspirations, dreams, goals, and plans will shift over time. Honor where you are and how far you have come!

Connect with Molly

Instagram: @betterbelliesbymolly

Facebook: Better Bellies by Molly

YouTube: Better Bellies by Molly

Working from home is more than a job perk for those with IBD

The COVID-19 pandemic has normalized talking about chronic illness in the workplace and shed light on not only what it means to be immunocompromised and how it impacts one’s quality of life, but also the benefits and possibilities that working from home provides for everyone involved.

Prior to the pandemic, asking to work from home or setting up accommodations with your boss looked different. It could feel a bit taboo. Maybe you worried how the rest of your team would perceive you as possibly getting special treatment. Maybe you didn’t want to appear as if you couldn’t keep up or do what was expected of everyone else. But one of the positives to come out of this crazy time is that the way we work and how we work has shifted.

I’ve been a freelancer/blogger and stay at home mom since I became a mom in March 2017. That being said I worked full-time in the TV news industry, at a PR agency, and in corporate America at a natural gas utility the first 12 years I had Crohn’s disease. I am well-versed in how to navigate those difficult conversations with your boss, how to balance your health and well-being with your career, and what it means to thrive professionally while making sure your health doesn’t take a hit.

An opportunity for change

If the past 13-plus months have shown us anything, it’s how adaptable and flexible work can be. Businesses and organizations have real-life intel now that can help guide what the future of working looks like, and how employees can best be supported, engaged, and accommodated.

The chronic illness community can use this time as a springboard into the future and communicate their needs and hopes moving forward. According to the CDC, nearly 60% of adults in the U.S. live with at least one chronic illness. Even though that’s a huge percentage, many leaders still don’t know how to properly support employees who fall into this category and those of us who live with a disease such as IBD often question our own abilities and what we’re able to bring to the table compared to our healthy co-workers and counterparts. Working from home through the pandemic has evened out that playing field.

Having the flexibility to work from your couch or run to your bathroom in the comfort of your home versus in the middle of a big work meeting with your peers makes a huge difference. Knowing that you can schedule meetings and availability around blood draws, appointments with specialists, scopes, infusions, etc. offers great flexibility in managing your illness and getting the job done without feeling guilty for taking care of yourself.

How to better understand and support employees

From a chronic illness perspective, we push ourselves in all aspects of life, even when we’re running on empty because we constantly fear being viewed as less than. There are many ways business leaders can better support employees who are taking on a disease like Crohn’s or ulcerative colitis.

As people with IBD we worry about how we’re perceived by others because of the stigma that surrounds chronic illness. There’s guilt. There’s fear of being considered lazy. There’s the worry about coworkers judging you and thinking you’re a complainer or weak, when in fact they may not be aware of your whole back story.

So how can we improve the support of our managers?

Initiate communication: Ask your boss about setting up a 15-minute monthly one-on-one touch base to discuss how you are feeling and if you need additional support. Talk about what the next month looks like as far as doctor’s appointments, labs, tests, etc. I personally always felt better supported and understood by sharing my health struggles with my coworkers—whether it was my co-anchor and meteorologist or the communications team at the company I worked at. When I was hospitalized (which happened on multiple occasions) or needed surgery, I would email the entire team and give them a heads up about what was going on, so they heard it from the “horse’s mouth” and not through office hearsay or gossip. By articulating your patient experience you give others a chance to be empathetic.

Make the invisible—visible: It can be easy for us to downplay our pain or put on a smile when we’re flaring to protect ourselves, even on Zoom calls! The unpredictability of IBD makes work-life a challenge because you can start the workday feeling energized and ready to take on the world and after lunch feel like you can’t even stand up straight and need to lie down. The constant uncertainty of when symptoms are going to strike can be debilitating in and of itself. By being open and transparent in these moments of struggle you help paint a clearer picture of what you’re experiencing for those who don’t live our reality. In corporate America, I used to sit in the boardroom and start a meeting by casually saying “I just want to let you know my Crohn’s is acting up. I’m in a lot of pain. It’s hard for me to sit up straight so I’m going to slouch a bit and I even had to undo my pants!” I approached those moments with humor, but moreso to take off my “mask of wellness” and be transparent that there was much more going on in my mind and body than just the presentation I was giving or listening to. I feel being honest like this made my co-workers helped us build a stronger relationship and rapport.

-Come up with a hybrid schedule: As the world starts to open and companies discuss what the future will look like as far as working from home or in the office, consider what it may look like to work a couple days a week doing each and finding balance. Working from home hasn’t been a detriment to productivity, if anything this time has proved how flexible we can all be in the face of adversity. By creating a space of support and understanding, everyone can be successful. Talk about the options available, your comfort level with returning to work in the office (especially if you’re immunocompromised or haven’t had a chance to be vaccinated), and what the expectations are moving forward.

Improve inclusiveness: When a business or organization makes employees feel embraced, regardless of their health struggles, it speaks volumes. Even those who are completely healthy should see this as a valued characteristic of their working environment—whether in person or virtual. Nobody knows when their life could take a turn for the worse or when an unforeseen health issue could pop up. For many in the chronic illness community, we went from being healthy to waking up with a disease that will be a part of us, always. It’s on leadership and Human Resources to ensure those with chronic illness are provided with the support they need.

Stop celebrating overwork: Touting the employee who works around the clock and answers emails at 2 a.m. sends the wrong message. Instead, find ways to commend employees for different reasons. There isn’t one set of parameters that makes someone a great employee. Having work-life balance and recognizing the importance of having time to decompress, put health first, and spend quality time with family, matters and says a great deal about leadership style. The number of hours worked doesn’t equate to the quality of work or one’s competence. The onus is often on the boss or leader to speak up and set these expectations. Being able to manage your team’s energy will keep morale in check and make employees feel appreciated and more invested in doing their best, because they have the energy to do so and aren’t ready to tap out at any given moment.

Remote work is more than a job perk

COVID has forced the conversation and illuminated the challenges those of us with chronic illness are up against when trying to balance our health, providing for ourselves and our families, and being an invaluable employee. Thanks to the pandemic, employers are now looking to re-evaluate what sick leave and disability policies look like, especially as they relate to working from home. Those of us with a chronic illness may finally feel like we’re on an equal playing field when it comes to job opportunities and not having to worry as much about our bodies cooperating so that we’re able to do it all.

Why Every Person with Chronic Illness Needs to Read “What Doesn’t Kill You”

Prior to receiving a chronic illness diagnosis, it’s incredibly challenging and nearly impossible to fathom ‘forever sickness’. In Tessa Miller’s book, “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”, she masterfully articulates the highs and lows of life with Inflammatory Bowel Disease (IBD). From navigating the diagnosis, flare ups, the healthcare system, relationships, and the mental health component, she’s created an invaluable resource that I wish every single person with chronic illness could be handed the moment they find out their life story has taken an unforeseen turn.

As someone who was diagnosed with Crohn’s in 2005, two months after college graduation, I wish my former self had these powerful words at my fingertips. The overwhelming nature of IBD can be nearly suffocating at times. As I read this page-turner of a book, I felt seen and understood. I found myself nodding my head, because I could relate to so much of her story and so much of her sage advice. I felt like a college student highlighting what felt like the whole page, because it was ALL so important.

Tessa and I are both journalists. We both have Crohn’s. We both randomly grew up in Illinois. I connected with her over social media after reading her New York Times article, “Five Things I Wish I had Known Before My Chronic Illness.” The article had an impact on me, so when I heard she landed a deal with a publisher, I anxiously awaited for this book to drop.

In the beginning of “What Doesn’t Kill You,” Tessa writes, “I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, “this too shall pass.” But what happens when “this” never goes away?”

Finding the Right Care Team

When you live with a disease like Crohn’s, it’s imperative you trust your gastroenterologist and care team and are confident in how they help you manage your illness. I always tell fellow patients to take a moment and think about who they will feel comfortable with at their bedside in a hospital room when they’re flaring or facing surgery. If it’s not your current doctor, it’s time to look elsewhere. Tessa breaks down the “qualifications” for getting a care team in place. From finding a doctor who explains why they’re doing what they’re doing and why to a doctor who looks at you as a human, not an opportunity.

“Good doctors see their loved ones in their patients; they make choices for their patients that they would make for their own family. Asking a doctor, “Why did you choose this line of medicine?” will reveal a lot about what drives them and how they view their patients.”

The Grieving Process of Chronic Illness

Receiving a chronic illness diagnosis forces us each to go through the grieving process. For many of us, we were naïve and felt invincible before our health wasn’t a given. We’re so used to feeling as though we’re in control of our destiny, that when we lose that control, we spiral, understandably. Tessa interviewed Paul Chafetz, PhD, a clinical psychologist based in Dallas. Dr. Chafetz is quoted in the book saying, “We go through life with an illusion of safety, guaranteed health, even immortality. Acquiring a chronic illness pierces that illusion, and this is a loss. Grieving this loss is an integral part of adjusting to the illness.”

Take a moment to stop and think how you coped those first few weeks and months after finding out you had a chronic illness. While acceptance takes time and comes in different stages, Tessa explains how flexibility and willingness to adapt to your new “normal” is even more important.

“Rather than searching for big, sweeping acceptance, then feeling like a failure when it doesn’t come, chronically ill folks can enact small, empowering steps, such as taking required medications, learning everything we can about how our diseases work, seeing doctors regularly and being prepared for appointments with a list of questions, advocating for our needs and wants, figuring out which foods makes us feel good, and going to therapy and/or connecting with a support group.”

In my own patient advocacy and experience living with Crohn’s I can attest to the fact that we all spend a lot of time wishing for our past and worry about what our futures will hold, rather than focusing on the right now. The majority of IBD patients are diagnosed prior to age 35. This leads most of us to experience the big milestones of adulthood (career, finding love, living on our own, family planning, etc.) with a disease in tow and wondering how that disease is going to complicate life or hold us back from accomplishing all we aspire to.

Bringing on the Biologics

Tessa calls herself an “infliximab veteran,” she spends a great deal of time talking with new patients and caretakers, mostly moms of young IBDers, about their fears. Most questions I receive through my blog and social media also revolve around biologics and the worries people have about side effects and whether the drug will fail them or be a success. I feel confident deeming myself an “adalimumab veteran”, as I’ve been giving myself Humira injections since 2008.

As patients we are faced with difficult decisions all the time and must look at the risk versus the benefit. Having health literacy and understanding your actual risk from a biologic is something that should be communicated with you from your physician. Tessa’s doctor explained to her that six in 10,000 people who take anti-TNF agents (Humira and Remicade) get lymphoma. But as patients, all we see on the internet and in the side effect notes are “lymphoma.” Force yourself to dig digger and remind yourself of your alternative—to not feel better.

The Truth Serum of Chronic Illness

One of the superpowers of chronic illness is that we get to see which family members and friends come to the forefront and which fade to the background. Not everyone is cut out to be a caregiver, but you’ll quickly see who has empathy and who genuinely cares. In my own personal experience, it’s helped me get out of relationships with guys who were no where to be seen while I lied in a hospital bed and allowed me to distance myself from friends who couldn’t find the time in their day to check in when they knew I was flaring.

Tessa says that chronic illness forced her to peel back the layers and the isolation wall she put up, too. Chronic illness has shown her that people do more than just hurt each other— “they nurture, they listen, they enrich one another’s lives.” Her IBD also empowered her to be brave enough to put an end to unhealthy relationships that weren’t benefiting her well-being, both with friends and love interests. Her Crohn’s has showed her that not every friendship is meant to support you in the same way.

This is a great piece of advice. As you live with a chronic illness, you’ll come to know which friends you can share your deep dark secrets and worries with, and which you give the high-level cliff notes version of your experience to. Your chronic illness will help you set those boundaries in a graceful way.

Her love story with her husband embodies what those of us with chronic illness deserve, a partner who sees us as more than our disease, but understands the severity and complexity at the same time.

Juggling a Career and Crohn’s

One of the biggest challenges of life with IBD is knowing how and when to disclose your health situation with your employer. You may wonder how the news will be received, if it will jeopardize your chance for promotion, if your coworkers will resent you…the list goes on and on. As someone who worked in the TV industry as a producer, news anchor and reporter for nearly a decade, and as a PR professional and corporate communications specialist, I’ve been lucky that all my bosses have been incredibly understanding of my struggles with Crohn’s, but never used them against me in any way. I’ve always waited until after I have received the job offer and then told my boss in a meeting the first week of work. This alleviated some of the stress on my shoulders and ensured my coworkers wouldn’t be blindsided when I had a flare that landed me in the hospital. By communicating openly, it also to set an expectation that I may not always feel up to par and that I may need more bathroom breaks or to work from home or come in late after doctor appointments.

Tessa so eloquently writes, “You want your boss to understand that while your disease affects your life, you’re still capable of doing your job. Deliver the necessary facts about your illness without bombarding your boss with information—keep it direct and simple. Be clear about how you manage the illness and that although you do your best to keep it under control, it can flare up. Tell your boss what you’ll do if and when that happens.”

Realizing the Power of Pain

One of my favorite analogies that Tessa shares in the book is that each of us carries an invisible bucket, some are heavier than others, and the weight of that said bucket is constantly in fluctuation. She says that as she started connecting with those in our community, she came to realize that her personal pain was no better or worse than anyone else’s. So often we weigh our struggles against those of others, and that’s not helpful to beneficial for anyone.

“Think about it: If a friend came to you in pain, would you tell them that other people have it worse and that their pain isn’t valid? If you did, you’d be a lousy friend—so why do you speak to yourself in such a way?”

Rather than thinking that ‘someone always has it worse’ ask for support when you need it. Don’t downplay your struggles out of guilt thinking you aren’t deserving of help. Give support when you can but don’t forget about the person you see looking back in the mirror, be loving, kind, and patient to them, too.

Leaving the Rest to Imagination

Some of my other favorite excerpts from the book are Tessa’s “Seven Secrets”. The secrets (both big and small) she keeps from loved ones and friends about her experience with IBD. The secrets are relatable. We don’t want to come off as a burden. We don’t want to scare those who mean something to us. We want to hold on tightly to the notion that our illness doesn’t define us, so we often don’t disclose the true reality of what encompasses our illness.

Another section I know you’ll love is “Thirty-Eight Experiences of Joy” where Tessa shares quotes from 38 different people with chronic illness and how they’ve discovered joy despite their illness. I’m honored to be featured in that section of the book.

She understands the power of community and how finding your tribe within your disease space and outside of it is an important aspect of disease management and life fulfillment.

“Connecting with other chronically ill people teaches you how to carry each other’s weight—when to lift when you have strength, and when to share the burden when you have no energy left,” writes Tessa. “I’ve found the chronic illness and disability community to be one of endless empathy and generosity.”

The Gratitude That Comes with Chronic Illness

I’ll leave you with one of my favorite quotes from the book and a perspective that I wholeheartedly share:

“At the beginning of my illness, I was so inwardly focused on what I’d lost that I couldn’t see the gifts illness had given me. Mom, a determined optimist, taught me to always look for the silver lining. Mine is this: Yeah, my body won’t allow for any bullshit—no jobs I hate, no relationships I’m not fulfilled by, no hours crying over wrinkles. Illness made me braver, kinder, and more empathetic, and that gives me way more radical power than the faux control I was clutching to for so long. In the most unexpected way, illness freed me. It compelled me to begin therapy, which kick-started the process of tending my wounds old and new. It made me focus on the present more than the anxiety of the future. And it made me be in my body in a way I never experienced before. Suddenly, I had to mindfully care for my body and brain as best I could and understand that beyond that, it’s out of my hands.”

Connect with Tessa:

Twitter: @TessaJeanMiller

Instagram: @tessajeanmiller

Her website

Purchase “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”

Amazon

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Stay tuned to my Instagram (@natalieannhayden) for a special book giveaway kicking off today (February 8)! Five lucky followers in the United States will receive a FREE hardcover copy of Tessa’s book.