Advocating for Your Illness in the Workplace

A word with health advocate, Samantha Reid

The CCYAN fellows recently had a chat with IBD blogger and health advocate, Samantha Reid, to discuss her take on managing IBD in the workplace.

CCYAN Fellows Leah Clark, Erin Ard, and CCYAN founder,
Sneha Dave, video-chatting with Samantha Reid

In February of 2010, Reid received a surprise that she never anticipated for during her birthday celebration. Three days after she turned 18, she was diagnosed with Crohn’s disease and began her adult life with questions, concerns, and ultimately, an ambition to help others with her disease.

Reid has had her fair share of experiences navigating her Crohn’s disease both in college and work. Majoring in english in college and working as a communications director at her previous job, Reid gained a solid foundation in writing, communication, and outreach. Now, her job allows her to focus on health and advocacy in the professional environment. Currently a digital director for the nonprofit organization, Patients for Affordable Drugs, she strives to change policy to lower the price of prescription drugs. Patients for Affordable Drugs is a patient organization, and Reid actually started there as a patient, so her peers understood her illness and created a safe environment for her to work in. Reid understands, however, how fortunate she is to be working in a flexible environment that meets her accommodations.

“I realize the fact that I’m even able to disclose my disability to my boss and coworkers is a privilege, and not everyone has that ability.”

Reid went on to encourage those with IBD to “play it by ear” and do what one feels comfortable with when discussing their health with their boss and coworkers. Disclosure can not only be an important step in establishing a safe work environment, but it can also be used as a learning opportunity for your peers. “It allows me to be more open and it allows my supervisors to be more open as well; it creates a space for dialogue,'“ Reid explains.

Along with being the digital director, Reid also has a successful blog, Sicker Than Your Average, that she frequently shares experiences with IBD on. She explains how her presence on social media has helped her with IBD advocacy with her work. “For all of my adult working life, most of my coworkers have known about my illness by default. Whether they know because they follow me on social media and see my advocacy work or they know because I’ve had to postpone a meeting because I was sick, most of them know.” Reid expressed how important communication upfront can be when tackling IBD at work. Giving your boss and coworkers a heads-up when sensing a flare or preparing for many doctors appointments can not only give you a sense of ease with planning, but also can inform your peers about the severity on an issue. With invisible illnesses, it can be hard to truly express how important your health is when others can’t see your pain.

“When it comes to asking for accommodations, communication is key. Any workplace that would be retaliatory about me needing accommodations is NOT somewhere I would want to work.”

Sometimes IBD can feel as though it is getting in the way of performing your best at work.
It’s important to remember to do what feels comfortable to you and prioritize your health.

Communication is not only good for planning for the future, but it is good for setting up workplace accommodations. Accommodations are there to alleviate any hardships put in place because of your illness. These can include having your office desk closer to a bathroom or having options to work from home. “In my current position, I have an agreement with my boss that I can work from home every Friday. Because of my Crohn’s, I struggle with extreme fatigue, so even having one day a week where I don’t have to get dressed up and commute saves so much in terms of my energy levels,” Reid explains. She said it makes an enormous difference to her, and she feels valued at a workplace that can accommodate to her needs.

One topic that Reid discussed when advocating for yourself in the workplace is the drive to, in a sense, redeem yourself to your coworkers when you are feeling healthy. It’s understandable to feel pressure at work to perform well, especially when you feel as though you are slacking because of your health. Missing work because of appointments, hospitalizations, and just sick days in general can cause one to feel inadequate in their job performance.

“For me, when I am feeling well, I probably overcompensate at work to prove myself. No one asks that of me, but I know it’s important to gain that goodwill while I can so that when I fall into a flare, people are more understanding.”

It’s important to realize that it is okay to take time for yourself to get better. For many IBD patients, health is a number one priority, and people will be understanding. Showing your boss and your coworkers, when you are healthy, that you can do your job right and well is completely fine.

With all the advice Samantha Reid gave the CCYAN Fellows, it’s clear that she is a remarkable IBD advocate and presence in the community. Her constant dedication to IBD awareness is shown through her work and her attitude towards life. Her insight on what to do and what not to do when it comes to advocating for your illness is the workplace comes from years of experience. Making efforts to communicate effectively with your boss and peers, setting up boundaries and accommodations to meet your health needs, and putting your health first when necessary are all great ways to help those with IBD navigate their work with ease. We at CCYAN hope those in need can use this advice and pursue their career goals without feeling held back by their diseases.

The CCYAN Fellows would once again like to thank Samantha Reid for taking the time to discuss this topic, and they look forward to seeing more of what she does in the future with health advocacy.

Samantha reid

Samantha Reid is an exceptional health advocate and role model in the IBD community. Her insight on advocating for yourself in the workplace not only those with IBD great advice, but also sheds light to important issues on workplace accommodations for all. For more information on Samantha Reid and places to connect with her, check out her social media and other platforms

Blog | Instagram | Twitter

In the Name of Love: The Importance of Having a Support System

By Erin Dunne

Stomach cramps, constipation, diarrhea, fatigue, low FODMAP diet, gluten-free diet, dairy-free diet, little fat, no sugar, no caffeine, MRIs, CT scans, GI exams, Prednisone, Remicade… the list goes on and on. If you have #IBD, the chances of you encountering at least one of these things at some point in your life is very high. Some individuals have what can be seen as "easier" cases; they are put on a single treatment plan that keeps their symptoms at bay and may even lead to clinical remission. There are others that may jump from treatment plan to treatment plan without seeming to find one that ultimately works for them. Each journey of somebody with IBD is unique, and while we can empathize with others and find comfort in similarities we may share, it is easy to feel alone in this adventure. Despite frustrations we may feel at any given point, it is essential to establish strong relationships to lean into and lift us — relationships with friends, family, professors, and ourselves.

Through love, even the impossible seems practical, and with a disease that is so unpredictable, this rationale is comforting.

I have had Crohn's Disease for thirteen years now, and I can honestly say that through the years, most of my strength has been obtained through my relationships with others. For many years, I was one of the fortunate individuals that often did not feel as though I had an illness. I took two pills a day, was not restricted to a specific way of eating, and experienced few symptoms. Compared to my friends around me, the only difference between us was that I had to take medicine at certain times of the day and had monthly doctors' appointments. Despite these minor differences, I still felt isolated from others my age. In my world, I was the only person I knew with IBD and had no idea of the various severities of the same condition. It wasn't until I attended Camp Oasis- Michigan that my eyes were finally opened, and I no longer felt alone in this journey.

My third summer at Camp Oasis. Can you spot me and CCYAN Admin, Sneha?

Throughout my time at camp, I met so many people with different stories, and I was fascinated by every one of them. Not only was it wonderful to be able to relate with others my age but also to idolize the older campers and counselors for how strong they were. I returned to camp for four summers and connected with so many lovely individuals throughout the years that have helped shape my life; some of which I still am in contact with!

I highly recommend trying to include people that have experienced IBD into your support system because not only do you gain more love in your life, but also people that get what you're going through! If you're anything like me and don't have family members or friends that are familiar with the disease, it can be hard to share stories, concerns, even successes without feeling like they're not entirely understood. (Sorry mom for the various bowel movement updates, but thanks for listening!) Getting in contact with others can be very easy! Communities like CCYAN, CCFA, Camp Oasis, and any groups through universities, hospitals are all great places to start. While each story is different, we are far more alike than you would think.

---

Although I mentioned earlier that I had considered myself lucky to have an easier time with Crohn's, the past two years have been anything but that. With being on the same medication for most of my life, it stopped being effective and could no longer support the inflammation in my system. I have been dealing with a reoccurring flare since and have gone through various forms of treatment to try to tame my symptoms. At first, I had become more aware of food intolerances, often experiencing diarrhea, severe bloating, and severe stomach cramps. Through trial and error, I have found a diet based on whole foods (vegetables, fruit, fish, poultry, nuts) makes me feel my best but I am still finding things that do not agree with my body (rip mangoes… you will be missed). I am currently taking Humira but am exploring other medication options. Even with all of the changes I have implemented to ease my symptoms, I know I can experience much better and strive to heal my body as much as possible.

---

I would be lying if I said I was always hopeful during this process of finding a treatment that my body reacts best to. There have been times I have broken down due to being so frustrated with not seeing or feeling any improvement; sometimes I can feel as though I am my childhood self upon the first diagnosis, scared and alone. At my lowest times, it can be easiest to isolate myself and wallow in my self-pity, but luckily, I have learned that my support group of friends and family, although they can't relate on a personal level, are always there to listen and help to the best of their ability. Being away from home for school, I am not able to lean on my family as much as I would have in the past. Although I have always been independent, it is comforting to know that I have loved ones around that are there for me through my struggles and my successes (never underestimate the power of a hug). I have been blessed to find another form of a family at Spring Arbor through wonderful friends that I love with all of my heart. Even though we have not known each other long, it is as though I have known them a lifetime. They go through my problems alongside me, help me come up with solutions, and act as my parents when I am sick and unable to leave my dorm room.

A few weeks ago, I was experiencing terrible symptoms; I was trapped in my bathroom the majority of the weekend and did not have much of an appetite. My friends knew I was not able to walk to the Dining Commons, so they took it upon themselves to bring me bananas and easy to digest, bland foods. Another day, I had expressed frustration with not having a doctor at the moment and feeling as though my current treatment plan was not working. My friend spent her afternoon going through scholarly articles and websites to find information on healing diets, fixing nutrient imbalances, and alternative healing techniques. Other times, when we are eating out or visiting someones home, they make sure I have something I will be able to eat. To say I feel loved and fulfilled is an understatement! I cannot stress enough the importance of having a support system in your life.

---

Whether you're currently dealing with IBD, mental illness, body image, etc, being able to express love for others as well as receive love from them is beneficial for your brain and your well-being! It does not matter what the size of your support system is or who is in it, as long as these individuals support and love you and are positive additions to your life. I hope while reading this you have thought of a few people that are currently in your life that help you each day, even in the littlest way. I encourage you to reach out to them and let them know how much they are appreciated! If you have interest in growing your circle or want to start one, as I have previously mentioned, there are plenty of ways to get involved and meet people from your area, different states, and even around the world. The ladies at CCYAN would love to hear your stories, connect with you and help in any way possible. Feel free to contact me with any questions, or if you simply want to talk!

Stay Lovely,

Erin