Tag: IBD blogger

5 Ways to Make Money At Home In The COVID-19 Era

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The way we work looks a lot differently these days than months prior. Chances are the COVID-19 pandemic has forced you to work from home, put your job on hold, or be out on the frontlines. Whatever the case may be, there are ways to adapt to these challenging times to help make ends meet. This week—a guest post from Annelise Bretthauer, a certified Financial Planner who also has Crohn’s disease. IMG_0834She offers up some invaluable advice about freelancing and educating yourself about opportunities that are right at your fingertips.

The gig economy has opened up opportunities to make money in a variety of new ways but many of these jobs are not conducive to our IBD community nor COVID-19. Although, driving for Uber or making grocery runs for Instacart offers great flexibility with work hours, it doesn’t meet our IBD needs and puts our immunocompromised community at risk. Thinking about what was available yesterday can blind us from what is available today and what might be available tomorrow. With every struggle and every hurdle comes a silver lining. We just need to know where to look.

The world will never truly be the same after COVID-19 and with that will come new opportunities. New opportunities for even more flexible work that is better suited to our IBD community. Opportunities our IBD community is uniquely prepared for.

We already know how to work from home productively. We already know how to manage hard times and keep going. We already know how to overcome daily challenges and find ways to keep our mental state healthy. We’ve been strengthening our creativity and time management muscles for years. We are strong and have developed a comfort with being vulnerable that allows us to show up in non-traditional ways that our peers cannot. To quote Brené Brown, we are masters at “being in the arena.” IMG_2273

We are wildly adaptable and we’ve already learned to find a community online and make deep connections without ever sitting face to face.

All of these things put our IBD community at the top of the talent pool when it comes to the new jobs that will be created (or established jobs that will evolve) through this crisis. Keep your eye out and your ears open. This list of 5 creative and flexible IBD friendly ways to make money at home is just the beginning!

#1: For The Typing Expert:

Write Transcripts for Audio Files

This job is ideal for those who already spends much of their day on the computer and can type quickly without error. You can make $0.25 – $2.50 per audio/video minute, which translates to ~$15-$25 per hour.

Here are a couple places to go to get started:

#2: For The Person Who Is Happy To Invest In More Education To Make A Bit More Money:

Become A Remote Tax Preparer

This job is ideal for someone who is detail oriented and thinks they could get behind making tax preparation fun and engaging. Once you complete the education (there are some costs associated with doing this) and become certified for tax preparation, you could make up to $100 per hour.

Here are a couple places to go to get started:

#3: For The Computer Wiz:

Get paid to test others websites for usability and content.

This job is ideal for those who can’t stand when a website is hard to navigate and has lots of ideas for how they could make it better. There is quite a range in pay per test (~$5-$90) but it iron’s out to an average pay of around ~$20 per hour.

Here are a couple places to go to get started:

#4: For The Person Who Loves Crossing All The T’s & Dotting All The I’s:

Become an Online Remote Notary (available in in 23 states)

This job is ideal for someone who is detail oriented and enjoys the process of making sure everything is done correctly. Although each state differs in what you are legally allowed to charge for notary services, in most states the maximum is $25 per notarization.

Here is where to go to get started:

#5: For The Early Riser or Night Owl Who Prefers Working Odd Hours:

Teach English Online

This job is ideal for someone who likes to be up early or stays up late. That is because many of the jobs are teaching English to foreigners in different time zones. Please note, many sites require a bachelor’s degree and a TEFL teaching certificate. The pay does vary significantly but most sites pay between $10-$26 per hour.

Here are a couple places to go to get started:

  • Magic Ears (need TEFL teaching certification + bachelor’s degree)
  • VIPKid (Platform offers TEFL certification but you will need a bachelor’s degree)
  • ET Teach Online (need TEFL teaching certification + bachelor’s degree)
  • Cambly (no experience needed)

If none of the options above speak to you or you aren’t sure where to start, check out Chronically Capable. Chronically Capable is a job site designed only for those with chronic illness. You can browse for jobs that have already been pre-screened by their team – pretty awesome huh!? IMG_7756

From one IBD warrior to another, don’t ever lose sight of your worth. Your skills and your adaptability will rise to the top of the talent pool. We can’t pour from an empty cup, so remind yourself that self-care is other’s care.

If you’ve ever been curious about how others make, save and spend their money, feel free to check out Annelise’s podcast, This American Wallet. She interviews different people from different walks of life about money. Available for a listen on Apple podcasts, Spotify, Stitcher or Google Podcasts.  

Disclaimer: This article is for informational purposes only and is not to be taken as advice of any kind. All pay estimates were made in best efforts given the informational available via each company website.

 

My family calls me “Sergeant COVID”: Navigating life while being high-risk, as the world reopens

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I’m preparing to feel like the bad guy in the months ahead. My family has already jokingly called me “Sergeant COVID”.  As an IBD mom who is immunocompromised, the decisions I make as the world starts to reopen may step on some toes. I’ve always been one to struggle with confrontation and take it upon myself to be a people-pleaser, which isn’t always a good thing. But this. This is different. I know there will be times I need to speak up and say no.

While out on a walk with my family in our neighborhood this week, we approached a house with two moms sitting side by side, a play date was going down.

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Daily walks and getting fresh air help to keep us sane!

Several kids ran around the yard. An SUV parked next to the two moms with their thermoses. I turned to my husband when I spotted them and said, “well there’s a playdate.” He laughed and said, “Are you not going to allow Reid and Sophia to see anyone for a year?”

Well, that’s a good question my friends. Who knows what these next few months will bring, and as someone who is immunocompromised from my biologic medication, that may need to be the reality if things don’t make a drastic turnaround for the better as far as number of cases and deaths.

I want to be together with my friends and family as much as the next person

I also understand the risk associated with getting together with people who have not taken social distancing and quarantine as strictly as my family has. I haven’t stayed in my house and neighborhood since March 12th and only ventured to the grocery store and for bloodwork once, to throw those efforts out the window. I haven’t cooked every meal for my family and refrained from ordering take out for nothing.

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Trying lots of new recipes has been a great distraction.

The moment I let my guard down before I feel comfortable, the moment I put myself or my family at risk.

As someone who’s worried about sickness from germs and flare-ups for years, I see this pandemic through a different lens than many. Anyone in the IBD community who is on immunosuppressive medication has a different perspective. I’m already anxious about having to justify my decisions to stay home as life slowly starts getting back to a new normal for everyone. But until I feel safe, we’ll be taking all the precautions.

I wonder just as much as the next person in the chronic illness community how to navigate these difficult conversations with well-meaning and otherwise “healthy” friends and family. When I hear about people getting together indoors, going for walks with people outside their nuclear family, having people over for BBQs, even being essential workers (which I know can’t be helped)—I know the date I’ll see those friends and family just gets pushed further away.

When things calm down, the first people my kids and I will see indoors, will be my parents, who have practiced strict social distancing and haven’t ventured out for anything but groceries. If they were out and about and seeing others, that wouldn’t be the case.

We all need to do what we feel comfortable with and worry less about hurting someone’s feelings or getting a little backlash for our decisions. Luckily, my husband Bobby has been extremely understanding and supportive and backs me up on how I feel. IMG-1529

The best thing we can do is over-communicate. Talk openly about life as someone who is immunocompromised and what recommendations and parameters around social distancing your care team has shared with you. By talking about what your doctor has told you, it validates your worries and fears.

It’s ok to feel disappointed and frustrated. Not everyone has been or will take social distancing and quarantining as seriously as you do. Focus on what you can control—and that is your actions and that of your families. You are doing all that you can to stay safe, and that’s what matters. I’ve had moments where I was physically shaking and so overwhelmed by emotions throughout these past few weeks—because of the actions of others. You see it on social media—the families getting together with several people for Easter, and birthdays, and Mother’s Day. People taking trips on airplanes. Social distancing block parties where people are all standing super close to one another. It’s truly mind-boggling and hard not be judgmental from my vantage point. If you need to cut down on social media or cut ties temporarily with those who you believe are acting irresponsibility, do what you need to do for your mental health and well-being.

We had originally planned to drop off my mother-in-law’s Mother’s Day gifts on the front porch and stay in our car, but my in-laws set up patio furniture on opposite sides of their large patio and we were able to hang out outside 20+ feet apart to exchange presents. It was nice to finally see one another from afar vs. through a window.

Constantly keep your finger on the pulse of research. There are so many physicians in the IBD community truthfully working around the clock to bring patients like us the latest and newest information about COVID-19 as it relates to Crohn’s and ulcerative colitis. Educate yourself on factual, research-based information. Follow top GI doctors on Twitter. Stay in touch with your care team and don’t hesitate to ask questions. Tune in for Facebook Lives and Twitter Chats from IBD Social Circle, IBD Moms, and many other great groups.

Lean on the patient community. Prior to the pandemic, life with a chronic illness already made us feel a bit like outsiders. IMG-1409Now more than ever, we’re being labeled as the “sickly”, the “disposable”, the “weak”, the list goes on. COVID-19 is not JUST about the elderly and immunocompromised, this is about everyone. As patients we have a unique perspective and understanding about the struggles we face daily and what it’s like to go through this challenging time. Connect with fellow patients online who get your reality, your emotion, and the whirlwind of going up against this invisible bogeyman. To refrain from social media, you can download awesome free apps like Gali Health and IBD Healthline, with helpful articles, community conversations, and chats by patients, for patients.

Your FOMO is nothing new. Chances are throughout your patient journey you’ve had to miss out on plans or cancel last minute. Will it be hard when the whole family or your group of friends are getting together, and you tell them you won’t be joining for the big “post-quarantine” reunion? YES. Of course. At the same time, you’ll probably feel comforted not having to worry if so and so is asymptomatic and waiting on pins and needles for two weeks to see if you’re in the clear.

I look so forward to the day when my family and I can reunite with those we love and miss dearly. I just ask that people have understanding, patience, and empathy for those like myself, who will be very fearful to return to life as we used to know it…if that will ever be. Maybe put on the kid gloves and imagine walking in our shoes before you say something that you can never take back.

Revolutionizing the patient experience through crowdsourcing: Use your journey to make a difference

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This blog post is sponsored. All thoughts and opinions are my own.

Coping with chronic illness is complicated. When it comes to IBD, no two people have the same experience, but there are often many parallels and overlaps. Crowdsourcing is now being used to understand how to best treat chronic conditions, such as Crohn’s disease and ulcerative colitis. By empowering patients from all around the world to share information on a large scale and leveraging the power of advanced artificial intelligence to analyze and organize that data, StuffThatWorks is revolutionizing how medical research is done.

Chances are you’ve heard of the popular app, Waze, which allows people to build maps and share data with other drivers to bypass traffic. It’s an app my husband and I use all the time! One of the members of the Waze founding team, Yael Elish, started thinking about how crowdsourcing could be used to understand how to best treat chronic conditions. Yael’s daughter started to struggle with a chronic health condition and wasn’t responding well to treatment. Her illness was taking a heavy toll on the entire family. Yael Elish and daughters_1

“It seems like almost everyone dealing with an ongoing medical condition dedicates endless hours researching, speaking with others, and scanning groups in search of something that can help us feel, and live better. We want to know if there are treatments that will work better, if our side effects are unusual, or if diet or lifestyle changes could make a difference. We look for people like ourselves and seek to learn what works (and doesn’t) for them,” said Elish, Founder, CEO, StuffThatWorks.

When it comes to managing chronic illness, it’s much like trying to find the needle in the haystack—the one treatment that will work best for us. The power lies with patients. We are the people who have tried various treatments and know what’s worked best. Crowdsourcing puts patients in the driver seat. Large amounts of information can be gathered from millions of people worldwide.

“I want people to feel empowered – and validated. To realize that their point of view and experience is not only legitimate but is extremely valuable to helping the world understand illness and treatment effectiveness,” said Elish. “I want StuffThatWorks to be a place where patients can share their collective voice and be heard by the medical community.  Where patients themselves are able to impact and drive the research that is being done about their condition and play an active role in finding solutions that will help everyone with their condition feel better.”

StuffThatWorks Currently Serves 85 Condition Communities

As of now, more than 125,000 people are contributing members within 85 condition communities. Over 6.5 million points of data have been shared! One of the biggest communities (fibromyalgia) has over 15,000 members. PCOS has 12,000.

StuffThatWorks is looking to grow the IBD community.

Right now, there are three communities, IBD in general, ulcerative colitis, and Crohn’s. Of these three, Crohn’s is the biggest with 729 members who have reported their experience with 270 treatments. The ulcerative colitis community has 409 members and 155 treatments in the database.

SymptomsUlcerativeColitis

Take the UC survey: https://stuff.co/s/5sSltbnK

On average, Crohn’s community members report they have tried 6.2 different treatments, and 37% describe their Crohn’s as “severe.” By sharing treatment experiences, our community members can use data to help one another figure out which treatments are best for different subgroups of people.

“The power of this database is that it can reduce the years of searching for the right treatment or combination of treatments. Our platform lets people explore how different treatments work effectively together, and we’re able to analyze everything from surgery and medications to alternative treatments, changes in diet, stress reduction and more,” said Elish.

COVID-19 response

StuffThatWorks is in a unique and powerful place to help advance the research on COVID and understand how it impacts people with different chronic conditions. Who is more at risk? Does the virus present differently in people with certain conditions? Do certain treatments work better/worse for them?

“We are currently prioritizing COVID-19 research by inviting everyone with a chronic condition to contribute to the research by answering questions about their experiences related to the coronavirus pandemic, even if they do not have the virus. We are also inviting all current StuffThatWorks members to fill out the coronavirus questionnaire and contribute to this new research,” said Elish. “We’ve also set up a dedicated coronavirus discussion forum, where doctors are answering questions and providing important information about the latest research.”

In a time when many people are feeling anxious and alone—discussion boards are helping to bridge the communication gap and allow for people to connect with one another. StuffThatWorks community members are seeking support about decisions: Should I cancel my doctor’s appointment? How much am I at risk if I am taking immunosuppressants? How can I help my partner understand my anxiety about coronavirus?

The world is suddenly realizing that crowdsourcing is the holy grail of how to gather health care data on a large scale. The real-time nature of it is particularly important, and the ability to get data from such a vast number of diverse sources.

Crowdsourcing research is limitless: The hope for the IBD community

You’ve heard the adage “strength in numbers”. Once large numbers of people with IBD sign up and become members on this free platform, everyone from the newly diagnosed to veteran patients can find something new and continue to evolve and learn about their patient journey.

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Take the Crohn’s survey: https://stuff.co/s/bzqQR5xP

“I want people with IBD to feel empowered – that this community is THEIRS, not OURS – and that they can determine what it’s used for and how it can be most helpful. They can add new research questions, post personal discussions or experiences and ask others specifically what works and doesn’t for them,” said Elish.

As members of the IBD family, by joining this platform we immediately become part of a supportive community where we can talk with others just like us, either collectively, or one on one, about how we manage and handle the day-to-day with our IBD.

Driving Research through Patient Reported Outcomes

Patients like you and me have power to influence the research direction of the medical world. We are all a piece of the puzzle and play a critical role in helping with the future development of medications and treatments, and hopefully one day a cure.

So much medical research is done using small groups and funding for large-scale research is extremely hard to come by. The opportunities are endless with crowdsourcing, in terms of the research that can be collected and the solutions we as patients can only provide. LightsCameraCrohns-Blogpost_image

Whether it’s shortening the amount of time it takes to get an IBD diagnosis or helping people find optimal treatments quicker, by sharing our experiences we gain invaluable insight into improving our quality of life and managing our chronic illness. It’s truly a win-win for everyone involved.

Check out StuffThatWorks and sign up for free as a member. Take part in building a knowledge base aimed at figuring out which treatments work best. Your story. Your experience. It’s powerful and it all matters.

My five year old has Crohn’s and was tested for COVID-19: A Mother’s story

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UPDATE: Since this story was shared on March 30th, Jadyn’s COVID-19 test came back. After two weeks of waiting, the test came back positive.

Imagine your 14-month-old baby being diagnosed with Crohn’s disease. That was the reality for Anna and Jon Richt of Georgia. Fast forward a few years and their daughter, Jadyn, is now five years old and thriving with IBD. This past week though, the Richt family had quite a scare. E06A1215Jadyn woke up with a fever and a slight cough. Given the craziness of the times we live in right now, they immediately called the COVID-19 hotline. Once the person on the other line heard about Jadyn’s health history and the fact she is immunocompromised, they agreed, Jadyn needed to be seen. In urgent care, Jadyn was tested for the flu, strep throat, and COVID-19. The Richt’s were told they would have a test result in five days, it’s been more than a week now, and still no result.

Prior to all the discussion on social distancing and sheltering in place, Anna and Joe had traveled domestically. Family members who had been staying in their home had recently traveled internationally. Anna says, “The strep test came back positive, which gave us a sense of relief. But it didn’t cancel the possibility of COVID-19. We have been watching her closely, ready to sound the alarm at any sign of health deterioration. Thankfully, she is feeling much better and I believe she is bouncing back to her normal self.”

What’s it like to raise a daughter with IBD from such a young age? Jadyn has a G-tube, and Anna is passionate about spreading awareness about feeding tubes to educate others. E06A1193I’ll allow Anna to take you back to the beginning, so you can have a better grasp of their ongoing journey and how it’s brought them to where they are today.

Seeing blood when my baby was six months old

I started seeing blood in Jadyn’s stool when she was around six weeks old and immediately called her pediatrician. He chalked it up to a couple of things, mostly related to breastfeeding issues and didn’t seem too concerned. When she was eight months old, my husband’s job moved us far away from family and her symptoms worsened. Her new pediatrician was concerned about her weight loss and sent us to the hospital for further testing.

A colonoscopy showed lesions all throughout her GI tract. Crohn’s disease was mentioned but the gastroenterologist was hesitant to diagnose it because of Jadyn’s young age. I did exactly what they say not to do and Googled Crohn’s Disease. The symptoms were spot on: “Bloody stools, persistent diarrhea, vomiting, loss of appetite, weight loss.” I’m not sure I’ve ever told anyone this, but deep down, I knew.

Dealing with the diagnosis

The diagnosis eventually came when Jadyn was 14 months old. fullsizeoutput_38f9The first couple years were nothing short of a dog fight. I remember sitting in my sister’s living room after an appointment when all of the sudden the doctor’s number popped up on my phone. She was calling to say that Jadyn’s lab results didn’t look good and we needed to head to the hospital right away.

My sister and I sat there in disbelief and cried. I remember her saying through her tears, “I feel like you are under attack.” We were. But we fought back. There have been countless doctors’ appointments, feeding tubes, eating therapies, procedures, you name it. She has been a trooper through it all and I am so happy to report that her current medication is working. Thankfully, she is a normal 5-year-old for the most part, which I don’t take for granted.

What has the journey been like for me as her mother?

It’s by far the hardest thing I’ve ever faced in my life. At the beginning I assumed it was something we could easily get under control and move on. I now know it is a marathon race, not a sprint. Watching my child suffer, and not being able to fix the problem despite my best effort made me feel like I was failing her. IMG_6044

It’s been lonely at times. Don’t get me wrong, we have the most amazing family and friends. They have supported us unconditionally every step of the way. But because she was diagnosed so young, we’ve never met another child her age with Crohn’s. I couldn’t call one of my mom friends and ask, “What anti-TNF drug worked for your child?” or “How are you potty training your two-year-old who is flaring?” Instead, we’ve pioneered this head-on, and I’ve completely relied on my faith to get me through. People often say how strong I am, but honestly, I believe it’s God’s strength in me that they see. When I look back on these past five years, I know without a doubt He has carried us. I can honestly say I am proud of the mother I have become due to this disease. I am brave and empathetic. I’ve developed grit and survive on grace.

What I want to say to parents of children with IBD

Take care of yourself. I always think of the airplane safety guide. Secure your oxygen mask before helping others. You cannot fully care for your child if you don’t take care of yourself first. Some days that may mean a 30-minute workout and drinking plenty of water. Other days it’s meeting with a counselor to address the emotional toll the disease has taken.

Let others help. They really want to. Use that time to step away and catch your breath.

See your child for who they are. Your child is more than their disease. They are uniquely designed for a specific purpose.

You can do this. I firmly believe that you were handpicked by God to be your child’s mother.  Continue to advocate and cheer them on. Take it one day at a time.

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Jadyn and her little sister

“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

You can follow Anna by checking out her blog: Grit to Grace

Anna’s Instagram: @grit.to.grace

Love and IBD: What I wish I would have known

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Love doesn’t always come easy. Especially when you have a chronic illness like Crohn’s disease. Dating, relationships and finding “the one” becomes a bit more complicated when your health isn’t on par with that of your peers. Before I met my husband Bobby, I had several eye-opening experiences that left me feeling unlovable and unworthy.

When I was diagnosed with Crohn’s in the emergency room two months after college graduation in 2005 and hospitalized for eight days, my boyfriend never visited and broke up with me over the phone the day I got home. Prior to my diagnosis we were head over heels in love and talked about the future.

When I was hospitalized with an abscess in my small intestine that was the size of a tennis ball over Fourth of July weekend and on the brink of surgery in 2008, my boyfriend of seven months never visited and told me gas prices were too much (for a 3 hour drive) and told me he preferred to go fishing.

When I was about to jump in the shower for a first date in 2009, I fell to my knees in my bathroom from excruciating pain and had to text the guy and tell him my Crohn’s was flaring and that I was headed to the hospital. He laughed at me and told me it was comical that I used that excuse and should just admit I didn’t want to see him. I was hospitalized with a bowel obstruction that night. Never heard from him again.

These were poignant moments in my 20’s that stick with me to this day. I look at those experiences now as a blessing of course, but hindsight is 20-20. When you’re in the thick of taking on IBD and trying to find someone to spend your life with, these struggles can feel overwhelming and extremely daunting. Not everyone is cut out to be a caretaker, and that’s ok—but if you live with a chronic illness like me, it’s imperative you find someone with a nurturing heart, a patient personality, and a comforting way about them.

bobbyWhen you fall in love with IBD, there’s an extra layer of complexity, trust, dependency, and appreciation. There’s no telling what the next hour will bring. You need to be flexible. You need to be understanding that plans may not go as expected. You need to trust that when the next flare up strikes that you won’t be on your own and that your partner will be there every step of the way.

Imagine doing a trust fall. You need to count on your person to ALWAYS be there to catch you when they least expect it. Bobby3You need to believe that when the going gets tough you won’t be deserted; you won’t be made to feel as a burden. You need to trust that your partner sees you as much more than your disease.

Love and IBD isn’t always sunshine and rainbows, but that’s the case with every love story. It’s navigating unknown waters and knowing that just because you go under for a little while, doesn’t mean you won’t be floating in the calm soon. It’s being vulnerable with the fact that your body will continually let you down, but it’s also capable of surprising you, too. It’s knowing when to ask for help and not being scared to communicate your needs. It’s making sure your partner knows how much you appreciate all that they do, even if they don’t feel like they’re going above and beyond. It’s the comfort of knowing that any minute of the day, you can tell your partner you’re unwell and everything else going on becomes background noise.

If you’re reading this and you haven’t found your person or if you’re unsure about whether your significant other is meant to be, think about the type of person you want alongside you as your #1 confidante for everything in life, including your disease.

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If you feel like a burden, if you’re made to feel like your disease is a joke, if you feel like you’re ghosted anytime your health goes awry, take all those feelings as red flags. Sure, the way some of my ex’s treated me when it came to my Crohn’s was extremely disheartening, but at the same time those flare ups were the truth serum I needed to see people’s true colors. Use this to your advantage.

When you find the person who genuinely chooses to stay, to be your rock, to be your sounding board, that’s when you know you’re where you’re meant to be. IBD causes us to be vulnerable, but it also opens our eyes to the true character of others and helps guide our way for finding love that’s meant to last.

Drowning out the noise of social media as a mom with Crohn’s

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Comparison. Feelings of inadequacy. Fear of missing out. Guilt. Jealousy. Chances are, you’ve experienced all these emotions and then some when it comes to your involvement on social media. While being able to connect with friends, family, strangers, and celebrities right at our fingertips can be fun and entertaining, it can also be detrimental to our overall well-being, especially as people who live with chronic illness. So how can we drown out the noise and focus on accounts and people who evoke joy, fulfillment, and empowerment? Oftentimes it’s easier said than done, but here are some helpful reminders.

Think about how you narrate and select what to post, others do the same. That selfie you posted with your husband, if only your followers knew you guys were having words hours before. That perfect photo of your child laughing, let’s not forget about the 50 takes and the tantrum that occurred before and after it. Remember that the photos you see capture a moment. They are often edited with filters, captions, you name it. Even though we know everyone crafts their content the same, we’re all so quick to envision how much better or how “perfect” the lives of those in our “inner” circle are. All comparison does is rob of us joy. camilo-jimenez-qZenO_gQ7QA-unsplash

If a certain person or a page is making you feel negatively, stop following, stop engaging. One of the best tools on Facebook and Instagram is the ability to unfollow (but stay friends with people) and “mute” people on Instagram. Pretty sure we all have accounts that make us feel a certain way, it’s not healthy to continue an online presence with someone who makes you feel unhappy or less than.

Stop chasing the “likes” and the followers. It’s so easy to get caught up in the numbers. How many people liked this post, how many followers does he have, how did she get so many followers? sara-kurfess-6lcT2kRPvnI-unsplashIn a world where we all want immediate gratification, think about how it feels when you share something and there are crickets on the other end. Use your social media channels as a platform to share what you care about and what matters most to you, rather than trying to think about what others want to see.

Be conscious of the content your put out in the world. Everybody is facing their own struggles, regardless of how wonderful their life looks on social media. Be cognizant of the fact that your words and posts could cause someone else to hurt. Think about how your friends with fertility or child loss feel each time they see a pregnancy announcement or baby photo. Think about how your friends in the chronic illness community feel when you’re talking about your remission or even your setbacks. It’s not to say that we shouldn’t celebrate huge milestones or challenges, but there’s a way to be tactful, a way to be considerate. Be empathetic to others.

For me, my Crohn’s has been in remission since August 2015. I’m going on almost five years of feeling well, most of my days, which is great…but often as people and as patients we feel a sense of guilt for doing well when our peers are in a flare or constantly in the hospital. There’s a survivor’s guilt that plays into chronic illness. While you may want to celebrate how well you feel, also remember when you were the person in the hospital bed.

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Hospitalized with a bowel obstruction the year of my surgery.

Remember how you felt the day you were diagnosed. Remember how you felt getting rolled into surgery. Remember how you felt waking up from your colonoscopy scared to hear the results. Just remember.

While social media has done wonders for the IBD community and other health spaces, there are still people who bring others down. There are many people professing cures and providing false hopes to those desperate for answers. Be weary of who you let in. Recognize that there are keyboard warriors out there who don’t care about you and will say something for shock value or to bring you down. Be skeptical when you see messages from strangers telling you to try this diet or join a group. I know when you’re feeling isolated in your illness you jump on the opportunity to connect with someone you think “gets it” but be mindful of these connections and guard your heart.

One of my favorite things to do after putting my kids to bed is to charge my phone in the kitchen and turn it on silent. This forces me to be present with my husband and relax. Relax from the pressure of commenting and engaging and just shut out the outside world. While being accessible and helping others is one of my favorite parts of patient advocacy and something I do with all my heart, it’s important to know when to take a break and when to focus on who is right in front of you, rather than a stranger who you’ve never met.

Three years of Lights, Camera, Crohn’s: 10 Tips for Becoming an IBD Blogger

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Tomorrow (July 23, 2019) marks three years since Lights, Camera, Crohn’s became a reality. Three years since I closed my eyes and took a major plunge, wondering if my words and effort would make a difference. Three years since I decided it was time to stop living my IBD life in the shadows, and instead bring my personal struggles and triumphs to the forefront. A31AD785-CDF7-43D5-BA1D-BFDDC69B493EI chose to blog and become a patient advocate for several reasons. I was tired of feeling isolated. I wanted to be a voice for the newly diagnosed, as well as the veteran patient. And, as a journalist, I’ve always had a love for the written word. For me—expressing myself through writing comes a lot easier than saying the words out loud.

July 23rd is a big day on the calendar each year for me—it’s the anniversary of my Crohn’s diagnosis (14 this year!), my dog Hamilton’s birthday (He’s turning 11) and it’s the day I met my husband online (6 years ago!). If that’s not a sign that things happen in threes, I don’t know what is! Knowing this, I had to launch my blog on this day. Rather than focus on how many years I’ve been riddled with a chronic illness, it’s a way to celebrate how far I’ve come on my patient journey.

I’m going to do a little humble brag right now. Since launching my blog in 2016, I have never missed a week of posting fresh content. Through two pregnancies and being a stay at home, IBD mama with a now 2-year-old and six-month-old, I found a way to stay true to my own personal deadlines, because this blog, and this community and IBD family are so important to me. 41113C90-2C99-4252-B69B-212DB2295A33In that time, I’ve shared 171 new articles (because some weeks I post on Mondays AND Wednesdays). Over the last three years, more than 105,000 people from around the world have checked out Lights, Camera, Crohn’s. Could the articles be organized better? Yes. Could the design be snazzier? Yes. But, my focus as an IBD blogger and advocate is to give you the nitty gritty. I’d rather spend my time and energy on content vs. design.

One of the most common questions I receive is, “How do you become a patient advocate?” or “How do you become a blogger?” It obviously takes time, passion, and commitment.

Here are my top 10 pieces of advice for you, that I wish I would have known before blogging.

  1. Write for the reader and for yourself. As patient advocates and bloggers, it’s generally our own personal experiences that shape the content we share. That experience and viewpoint is invaluable, but remember—the reader isn’t here to check out your diary. They are here to learn ways to improve their patient journey, to educate themselves. When you write, write to the people reading. Don’t bore them with every.single.detail. of your doctor appointment. Use that experience as the foundation and springboard into a larger discussion that is easy for others to relate to. Think “news people can use”…otherwise, why read your stuff?
  1. Be bold. Be vulnerable. It can be very stressful and overwhelming to put your whole health story out there to the public. If you’re like me, I kept my disease to myself and close family and friends for a decade. Going from that—to sharing my story with thousands, is polar opposite. But, I can tell you, once you open up, you won’t regret it. The moment you break down your own barriers and show your true stripes, you open yourself up to endless support and quickly come to realize how many others understand your reality.
  1. It’s not a competition of the sick. Just because you haven’t started a biologic, just because you haven’t had surgery, just because you don’t have a bag, doesn’t mean your patient journey is any less significant or important. IBD impacts each and every one of us differently, but there are so many parallels along the way. Trust that what you are going through physically, mentally, and emotionally is something many people can relate to. I haven’t been hospitalized for my Crohn’s since August 2015 (before my blog went live!), but in my 14 years living with the disease I’ve experienced so many highs and so many lows, so many flare ups and so many feel good days. It all matters. And it’s all a part of it. People don’t just want to see you in the hospital or struggling, they want to see other aspects of your life, too.
  1. Be patient with yourself through the process. Writing about life with IBD can be emotional. It can be draining to bring up old memories that were the most difficult days of your life. It can also be cathartic. Write stream of consciousness-style. Rather than thinking about each word and constantly hitting the delete button, just let it flow. Edit yourself later, not in the moment.
  1. Have a thick skin. Being a patient advocate and a blogger isn’t always sunshine and rainbows. You are going to receive both public and private messages from naysayers. People may question why you aren’t “healing yourself with food” or “why you need a biologic”. The only person you need to answer to is the person looking back in the mirror, along with your physicians. No matter how much you share online, no one has the FULL story of your own personal experience. Let the judgers, judge…and keep on trucking. Keyboard warriors have a way with words, don’t allow others to bring you down or stress you out. That’s the last thing we need living with IBD. I’ve come across a few instances on Twitter, where banter got pretty heated. When my heart started racing and my stomach started hurting, I knew it was time to block them and move on. Don’t be afraid to block when needed.
  1. Remember you are a patient, not a medical professional (unless you are both!) It gets dangerous when patient advocates spout off medical advice to those desperately looking for answers. When people come to you for support or with questions about how to handle their care—always advise them to talk with their care team, and remind them you are not a doctor, but this is what has worked for you. Yada Yada Yada.
  1. Lean on others in the IBD family for guest posts/sharing your content on social media. Advocacy is not a competition. There is room at the IBD family dinner table for ALL of us. Interact with other people’s blog articles and social posts. Show them the love, chances are, that love will be reciprocated. Oftentimes, it can feel like everything you are doing is falling on deaf ears (thanks so much, Facebook algorithm)…that being said, don’t focus on the “likes” and the “comments”…if your article or your words help one person or one family, you’ve made a huge difference.
  1. Always be on the lookout for content. The former TV news anchor and reporter in me always has my eyes and ears open for the next story. Look at social media and see what’s trending in the IBD community. Ask your followers what topics they’d like to see more on. Set up Google Alerts in your email to see the latest about IBD research and news. Pay attention to people’s stories. When someone reaches out to me with a question, I often dig a little deeper and see if this is something that would make for a good article. Every single person has a story to share, it’s just a matter of discovering what that story is.
  1. Be authentic and true to who you are. Oftentimes businesses and companies will reach out to patient advocates looking for promotion or support. Don’t be a “yes-(wo)man”. Only promote causes and products that you genuinely believe in. Don’t sacrifice your hard-earned credibility for a few bucks, because your credibility is priceless.
  1. Stop selling yourself short. Your IBD life and story is valuable. Gone are the days when big pharma and businesses can tap into us as resources for free. We’ve all gotten smarter about this. Your painful journey hasn’t been easy. But, with that journey, you’ve gained a perspective that businesses are thirsty for. They NEED our insight. They NEED our input and perspective. Unless you live with IBD personally, you can’t fully grasp what it’s like. Sure, volunteer work for the Crohn’s and Colitis Foundation is one thing, but as soon as someone wants you to be an “influencer” or speak at an event, etc. know your worth and don’t ever be afraid to ask what the compensation is.

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I’m hopeful that three years from now on July 23, 2022, I’ll still be blogging and will still be a vocal voice for the IBD community. Thank you for sharing in my journey and for pushing me to be better. Thank you for reading and for caring. Thank you for being a listening ear and a watchful eye. Thank you for walking alongside me through pregnancies and motherhood as a woman with IBD. I promise to deliver more content that helps guide you through your journey and show you just how capable you are of being everything you ever hoped for. God bless.

XO,

Natalie