March 27, 2021
In 2020, I did a lot of talking. In 2021, I pledge to listen.
This is the first in a series of blog posts all about how to learn from each other and become a more compassionate person/business owner/leader/partner, and I hope you will join me.
First, I want to acknowledge that Jackie should not have to carry the weight of educating able bodied individuals about her illness, the point of this interview is to hold space for Jackie and others with chronic illness, so that I can do better than I have done in the past.
We are all about making conscious decisions to be on the right side of standing up for people who have different abilities and needs. But let’s be real, we don’t always know exactly what to do to take us from “performative” to tangible action. Yes, we can donate and share Instagram posts (and we should!) but there is more that is needed to make a change.
In this interview with my friend, Jackie Coffin, freelance marketing expert, she graciously took the time to educate me (and you, my dear reader) on what it is really like to live and work with a chronic illness. Inclusivity and diversity means creating space and opportunity for people with different backgrounds, experiences, marginalized groups, people of color, and physical abilities.
There are a couple of parts of this interview that really jumped out at me. As an HR professional and small business owner myself, I admit that there are always ways that I could have done better. I am ashamed to say that I have misjudged the capabilities that I may have had in hiring individuals with different abilities. There has been more than a handful of times where my employees have disclosed illnesses or needs after they were hired.
Before you read this interview, I hope you will open your mind and heart. There have been times when I have felt defensive, uncomfortable, and even less open than I care to admit to the struggles of others in the workplace. I have “red flagged” people in the interview process that I shouldn’t have, and the company lost out on wonderful candidates for this reason.
As business owners, we can choose to make a difference in the treatment and opportunities of others. Jackie and other individuals who live with chronic illness are bearing the burden of their experience while also taking the time and energy to educate able bodied individuals like me.
Jackie’s answers really put things into perspective for me, as I hope they will for you.
Tell us all a little bit about you and your business!
I’m Jackie Coffin. In October of 2020, I opened my own marketing business called Marketing Socially With JC. I have over six years of B2B marketing experience. I specialize in social media, content creation, brand strategy, and virtual assistance. I have covered just about every area of marketing and am passionate about helping businesses grow. Please visit my website at marketingsociallywithjc.com for more information.
Can you tell us about the illness that you are living with.
I am currently diagnosed with an autoimmune condition called Sjogren’s Syndrome, Fibromyalgia, Small Fiber Neuropathy, and Migraine. Many people think that Sjogren’s is just a disease that causes dry eye and dry mouth, but that couldn’t be farther from the truth. It can affect just about every part of your body including the potential for organ damage. I deal with constant joint pain and fatigue. Fibromyalgia causes pain throughout my entire body, sensitivity to touch, fatigue, and brain fog. Small Fiber Neuropathy is damage to my nerve endings. This causes my hands and feet to tingle and often feel numb or like they’ve fallen asleep. I also feel an exceptional amount of pain in my feet.
There is a lot of discussion about “Invisible Illness”- can you explain what that is, and why it matters.
Invisible illness refers to very real illnesses that are often overlooked or discredited because someone doesn’t “look sick.” Many autoimmune disorders fall into this category. Someone could be extremely ill and dealing with a massive amount of pain, but they don’t outwardly look sick. Because someone looks healthy, people often won’t believe that the illness is real. Invisible illnesses are very real and it’s exhausting and painful to be discredited. We fight every day against our own bodies, we shouldn’t have to fight with people who don’t believe we’re sick.
What are some of the ways we can be inclusive when hiring and managing people with chronic illness?
This is such an important question. It would be amazing if potential employees could feel comfortable telling hiring managers about their health conditions and/or disabilities without worrying about the ramifications. I have always been told to hide my condition when applying for roles so that I’m not looked down upon or not selected. It shouldn’t be that way.
As of right now, I think many people are concerned about what might happen if you speak up about being ill. We’ve all filled out a job application and seen the checkbox that asks if we have a disability and then the disclaimer that states you will not be discriminated against. Legally, companies may not be able to fire you for your illness or disability, but that doesn’t mean that they can’t cover things up by finding a different reason to let you go.
Those with disabilities have been asking for simple accommodations for years such as flexible hours, time for doctor’s appointments, or the ability to work from home. It always seemed like we’ve been told that it’s unreasonable or not possible.
Suddenly, the pandemic hit and accommodations were made overnight for employees. To many of us in the chronic illness community, that felt like a slap in the face. I truly hope that one of the good things to come out of this pandemic is the realization that chronically ill and disabled individuals are valuable and worthy even if they need a few simple accommodations.
I am familiar with your work, and I would never have guessed that your illness is a part of your day-to-day life. How do you think this has affected your career trajectory? Do you think more inclusivity would have affected your path?
I spent 10+ years in corporate America. I used to work well over 40 hours a week and since I wasn’t ill at the time, it was exhausting but manageable. In the last 5 years, working extended hours and working in an office has been extremely difficult. Out of fear for my job, I didn’t disclose my illness and continued to push on, even though it was hard. I would come home every night and be so exhausted and in so much pain that I was unable to do much of anything.
The only time I disclosed my illness is when I had a direct boss who suffered from MS. She gracious, kind, and completely understood what it was like to suffer from an invisible illness. She allowed me to work from home on difficult days and never questioned when I needed time off. If there were more bosses like her and more organizations that accepted those with illnesses and disabilities, the world would be a much better place.
I made the decision to open my own business last year and one of the driving forces was flexibility. The ability to set my own schedule and work from home (or even bed) if things aren’t going well has made a huge difference.
It can be intimidating to ask for help in understanding the different abilities of others. What is some advice you can give us, not just as business owners, but as humans, to connect with people who disclose a chronic illness in a professional setting?
I think the most important thing to do is listen. If someone has disclosed their chronic illness and struggles to you, listen to their story and ask how best you can support them. I’ve had people offer to get groceries for me or drive me to a doctor’s appointment when my pain is too unbearable and it means the absolute world to me.
The other thing is taking time to learn about their illness. Educating yourself on someone’s illness and some of the things they may have to deal can go a long way.
What are some common misconceptions about chronic illness/your diagnosis that really piss you off?
Going back to your earlier question about invisible illnesses, people doubting that I’m actually ill makes me beyond angry. Just because I decide to put on makeup and make myself presentable doesn’t mean that I’m not suffering.
Do’s and Don’ts: What are some terminologies, classifications, stereotypes, pretty much anything that is super outdated/cringey that we should be aware of as we seek to be aware of the experiences those with chronic illness?
Please don’t offer unsolicited medical advice. Don’t assume that someone is not ill just because they look healthy and can walk without a mobility aid. Don’t imply that we’re using our illnesses as an excuse. Try not to guilt your chronically ill friends if they have to cancel plans or don’t feel up to something. Remember that more than likely, they wish they could come out with you or keep their plans with you.
“You don’t look sick.” “You look really tired today.” “You look better than the last time I saw you.” “You’ve gained some weight.” “You’ve lost a lot of weight.” “Get well soon.”
All of those things are unfortunately things I have been told. Due to a constantly changing medication regime, sometimes I gain weight and sometimes I lose weight. It’s often out of my control and I don’t appreciate when someone points it out.
It’s very unlikely that chronically ill people will get well. Instead, try saying something like “I hope you find relief” or asking “Is there any way I can help you?”
Also, your experience as an able-bodied person is not usually the same as what a chronic illness patient goes through. For example, sometimes I’ll mention being exhausted and someone replies, “me too!” Chronic illness exhaustion is not the same as going a night without sleep.
There’s more to Jackie than her illness. Here’s a few tidbits about Jackie, and scroll down to follow and connect with Jackie on Instagram.
Who are your favorite people to follow on IG? @heatherkmcmahan, @thechronicallyhonest, @bertiebertthepompom, @wearewomenowned
What do you do for fun? I’ve been performing in theatre for 20+ years.
What would you have done differently in March 2020 if you would have known we would be indoors for a year? Definitely go out to eat every single day with all of my friends and family.
Who do you help with your business? I mainly work with small to medium sized businesses who want to increase their social media presence and grow their brand. I am particularly passionate about helping women-owned businesses.
What services do you provide? Marketing Socially With JC offers a little of everything. I specialize in social media, content creation, and virtual assistance. However, I also do email marketing, copywriting, a bit of website work, and more. t
