Chronic University: Chronic Influencer 101 Q&A

5.26.21

Thanks to everyone who was able to attend our first ever Chronic University on May 6th. We weren’t able to get to all of the amazing questions you asked during the webinar, so we compiled the unanswered ones and had our speakers, Claire Sachs and Natalie Kelley answer them for you.

If you were unable to catch the live webinar, you can watch the replay here

Let’s dive in!

Q: I have been hiding my whole life and have recently just “come out” to my colleagues about my illnesses, and as a person with disabilities. What is the best way to get started on the influencer path? Is there a best technology to use? Is a website too old school?

Claire: It’s what you’re most comfortable with. If you enjoy Facebook communities, start there. If you spend time on Twitter exchanging memes with friends, start there. Since sharing is new to you, I would start small and grow into it. Laying the reality of it all out there may be overwhelming if you go too far too soon. The event that changed my mind was when a doctor invited me to speak to a room of students at Georgetown Medical School. I took it because he asked and I was helping him out. It wasn’t until just before the engagement that I realized that it was actually a pretty serious responsibility — the students’ first exposure to a patient. It turned out to be a life-changing experience, but I am not sure I would have done it if I had known I would be baring my medical soul (my choice) to 400 strangers. I was thinking more like my undergrad — 20 people in a little classroom. And that’s just what changed my mind. It took about a year and a half of thinking and planning to actually launch The Patient Advocate’s Chronicle.

Natalie: I think it depends on the route you want to go with social media and being an “influencer!” When it comes to Instagram and TikTok (the two I use the most), it’s as simple as starting your account, searching specific hashtags for your illnessesnder (ex. #chronicillness #chronicillnesscommunity #spoonies), following and connecting with people. I think starting on social media apps definitely helps with the community aspect at a quicker pace and also with connecting with companies if you want to one day work with them. And I agree with Claire that it’s all about starting small and remembering growing a platform takes TIME! I’ve had my Instagram for six years and only three of those have been specifically geared towards chronic illness. Focusing on community before focusing on making money is definitely the way to go and will ensure your niche, brand, and one day money-making is natural and authentic!

Q: Few things I'm apprehensive about. 1. I am 10+ years in to trying to get a diagnosis for chronic pain/illness - that said I don't see many who are out there that don't have a diagnosis yet 2. If employers search my name and come across my postings I am worried this would bar me from being hired OR insurance agencies using the information I put out to bar me from treatment so just worried about how this could potentially impact me - then on the flip side if I use an alias to protect myself then am I being authentic?

Claire: One – Don’t lose hope. Two – Treat your symptoms as if they are the diagnosis, because right now they are. And three – If you don’t have a doctor who you trust implicitly, who brings you into the decision-making process, find one. Your journey by itself will speak to others in your position. So, if you want to talk about it, you should. Also, discrimination is illegal but real. And cases of discrimination in the hiring process are hard to prove. If it were me, to protect myself, I would use a pseudonym. Choose a name you like, and tell people it’s not your real name and why you feel you have to use it. Open email and social media accounts associated with that name, or the name of your blog/Insta/TikTok. If you want to use a picture (people tend to trust more if they can see you), use one that obscures your face or you could use a mask.

Natalie: I have quite a few friends who are undiagnosed and still have thriving social media platforms and blogs. It’s a great outlet for them to still have a safe space to talk about their symptoms. And I have personally never seen there being an issue with feeling excluded in the chronic illness community on the platforms I use most, like Instagram, when someone is undiagnosed. Your pain and experiences are still SO valid. As far as discrimation, I can’t speak to that directly as I’ve always been self-employed (except for a short couple of months and my employer already knew about my condition). As Claire said, discrimination is illegal, but that fear is still so valid. I would say you could start your account under a “pen name” of sorts and link it to a new email using that same name so it’s not linked to a personal email. You could even keep it a private account at first and only invite personal friends and connections to follow you, but that may make it harder to grow a community. It’s all about finding your own comfort levels with it all!

Q: What app/program do you use to create your images? Eg adding text to your pictures?

Claire: I don’t. I use images from Adobe (paid service) for blog posts, but that’s it.

Natalie: When it comes to actual photos for my social media posts and blog posts I take those myself using my iPhone and edit using Lightroom. For graphic-like images I use Canva.com.

Q: May I ask what platform you're using for your blog, Claire?

Claire: Squarespace. I think it’s the lowest level of business account. And I pay for the associated Google email account.

Q: I have a full time job, and a mom to two little adorable people. I definitely have content I want to write about. But, how do I find help with developing things like logo, graphics and structure for a blog, FB page, etc..It's a lot of stuff…

Claire: I would start with friends and family, but failing that, there are companies that advertise those services. But be careful — they will try to sell you a bigger package than you need, especially since you will likely still be figuring out what you are going to need. Another option is the freelance sites like Fiverr and Upwork, and I know Squarespace offers services through the website.

Natalie: I would say start small! You can even consider creating an Instagram page to start growing a community and readership before truly diving into creating a blog because writing captions takes less time and it would give you something to pour into as you work on the blog creation. After that outsourcing and delegation will be your best friends! There are a lot of fun Squarespace templates out there on websites like bigcatcreative.com that are super aesthetically pleasing and a lot cheaper than hiring someone to create a fully unique website / blog for you. You would just have to customize colors (which you could outsource to have someone help you choose) and insert your own copy and photos.

Q: How did you overcome worrying about your appearance in photos/reels?

Claire: I haven’t. I have tons of weight and body image issues. Getting me to put an actual picture on my website was like getting teeth pulled without anesthetic. I made my best friend’s husband take it when we were on my 40th birthday trip. What it came down to was they convinced me that trust comes with a picture.

Natalie: This has definitely been a struggle for me over the years as I’ve dealt with a lot of body image issues and body dysmorphia since I was a child, but the more you do it the more comfortable you get! Working on my root issues with my body image through books and therapy helped me the most, so I learned to not criticize myself so harshly. I typically have my photos taken by my mom, my best friend, or photographers who I know personally which is helpful because they know to help hype me up. I also have a rule for myself when taking photos or reels – if I watch it back and don’t love how I look I take a deep breath and say something positive about myself instead of right away saying something critical. Also realizing people love seeing the real, authentic you and truly are not judging you based on your appearance! They just want to hear your awesome words!

Q: Going off “limited spoons”— any tips for not overdoing it as a chronic illness influencer?

Natalie: Setting actual work hours: I have a strong end-time for work which is hard when you work for yourself! But no matter what my laptop closes at a particular time. This isn’t how it always was and I was chronically (no pun intended) burnt out. Content batching: About once a month I try to take a BUNCH of content (instagram photos, TikToks, and reels) that will last me for 3-4 weeks. This helps a lot because I have one big day of energy expenditure instead of having to expend a lot of energy in small bursts over many days. Putting boundaries around social media: When social media is a big part of your job it’s easy to get super sucked in – always replying to DMs, giving advice, etc. I put strict boundaries around when I go on, when I will reply to DMs and comments, when I will post, etc. so I’m not feeling drained from it. Give yourself grace: there are so many weeks I do not stick to my social media schedule because I simply end up not having the energy to write a caption or post and that is SO okay. Rest is productive and it’s okay to take breaks.

Claire: I’m with Natalie. Set boundaries and really assess the amount of time you have to give. Build in buffers and don’t skimp on set-asides for sleep and self care time. It feels bad to commit time to yourself, let alone an organization, and then not be able to fulfill your internal commitment. Also, don’t be afraid to let yourself off the hook if that happens. High stress and lack of stress impact health, and the effect is amplified for us. And don’t forget that there can be a lot of planning behind time spent on social media or producing content, so it’s not just active minutes you’re counting, but the indirect costs, as well.

Q: How do you stop giving away free stuff and start charging? Natalie, for example, starting out coaching for free, how did you transition to charging for that and was it hard on your initial following to accept?

Natalie: I actually never did coaching for free! I started at a lower price and called them my “beta” clients to help build my testimonials and experience, but I set the precedent from the start that my services aren’t free because I already do provide a lot of free content. I then slowly increased my prices for both coaching and collaborations with companies to prices I feel my time is worth! I think a huge thing with this is working on your money mindset – working on confidence around charging money, confidence around talking about money, believing you’re worth the rates you want to charge, and believing that people will see that worth and pay you. I loved the books “Love Money, Money Loves You” and “The Soul of Money” to help with this (and also unpacking financial anxieties in therapy). If you are confident in your work and pricing and that confidence shows your community WILL respect your rates!

Q: How do you go about approaching companies that you would like to promote on IG? What sort of following do you need first? What sort of compensation is reasonable? I’m a complete beginner with this stuff! I have been using IG for less than a year

Natalie: I always approach companies through Instagram DMs and say something like “Hi [insert company name], my name is Natalie and I’m the face behind Plenty&Well. I love your brand/business because of XYZ. Is there an email I can reach out to about a possible collaboration?’ It’s a lot more professional to reach out officially via email so then when I get the email I explain more about my own brand, why I love their brand and how our missions match, and then ask if they are taking on any new collaborations at the time. I truly believe you can start pitching yourself to companies as soon as 1,000 followers or even lower! The worst a company can say is “no.” And compensation depends a lot on your followership size and what feels aligned for YOU. Maybe at 1,000 followers you ask for $75 for a post and maybe when you’re at 30,000 you ask for $600 for a post! Could be more, could be less, whatever feels good for you. There is truly no set rates for this field of work, so it truly is up to you!

Q: How do you manage to keep up with content surrounding your illness? Sometimes I feel like I find it hard to keep up with content about being sick, when I’m feeling good and wanting to take advantage of that time, get out and live my life.

Natalie: I have been in this spot SO many times and that’s when I really moved my content to focusing on MY personal journey to being more about the lessons I can teach, the topics I coach about, tips, etc. This helped me a lot because although I write about chronic illness daily, I’m not always thinking about MY specific situation. And also remember that it’s okay to show the good moments on Instagram! I used to shy away from showing my life when I was feeling better because I didn’t want to make anyone sad in my community, but I’ve found it helps give my community hope. Maybe think of ways you can talk about chronic illness in a more neutral way outside of your specific journey.

Claire: I don’t. I post things like that on Twitter. When I produce content, it focuses a lot on what I believe to be common experiences that would resonate across the chronic and autoimmune community. I actually considered this when I was deciding what the focus of my blog would be. There are tons of good diabetes and kidney disease blogs out there, and I have so many diseases. It made more sense to talk about common issues, and the number of people doing something similar was very small. I also produce content around one thing that I love — explaining policy. I feel like we are affected by a lot of public policy, but the language and the layers sometimes make it hard to understand. But we should understand when lawmakers are making rules that will impact us and our diseases.

Q: Where and how do you find your info?

Natalie: I’m not 100% sure if you’re asking how I found my info on becoming an influencer, but if so, I honestly just kind of dove in and tried it out! I also followed people on social media who talked about influencer marketing tips and tricks, attended free webinars, googled a lot, and searched on Pinterest for articles. But mainly, it was trial and error!

Claire: The info I use to support informational posts and that I put on social media comes from newspapers, including local newspapers, publications/journals like Health Affairs, STAT, and Kaiser Health News, and the academic publications like JAMA, NEJM, and BJM. I also post podcasts. What the Health is a good listen, but there are tons with people like us sharing their stories. I also use an aggregator, Feedly, to make sure I am not just rotating through the same sources all the time. I usually stick to publications where I am familiar with the work, or at least have been around long enough to have proven that they are a quality resource.

Q: Do you all have full time jobs that you also have to juggle? If so, do you have recommendations for juggling chronic illness life with a full time job while being an influencer? It's a lot to manage!!! 🙂

Natalie: Chronic illness mindset coaching and social media are my full time job, so Claire would be better at speaking to this! Shoutout to everyone who juggles a full time job ontop of being an influencer!! You’re amazing!

Claire: Yes, I had a full time job for the first three years, so basically I had about 3.5 jobs — day job, disease(s) because of course managing your health is a full-time job, the blog, and volunteering — I was running a non-profit local chapter for a while, among other things. However, I am single and without kids, so I have no obligations that I can’t just walk away from, except for the diseases — they tend to follow you, lol. That made assuming those responsibilities easier.

Q: If you are a brand designed for those with chronic illness and disabilities, and have also been using your platform for influencing/advocacy/awareness what ways do you recommend we reach out to work with other influencers in the chronic illness and disability space?

Claire: For me, it’s networking. I got laid off last July, and it was like the universe was telling me that if I wanted to make a push to do something more healthcare-related for my day job, now (then) was the time to do it. So, I started with the people I did know in the space and asked if they knew anyone I could talk to. So, it’s a chain, you learn what’s out there and that can help you figure out where you feel most at home in the health ecosystem. But networking can be hard, very hard, especially sending cold emails. But if you develop a script, you can just fill in the blanks. LinkedIn is a good tool, and I have found that people want to help/be generous, and many will respond. If that seems like it’s just too big a task or too scary, I don’t know of any organization that will turn down free labor. Most of the disease-based advocacy organizations have state/local chapters. If you can’t find contact info for the smaller chapters, contact the national headquarters, the person in charge of engagement, and they should be able to introduce you to some folks. Also, contacting your local hospital or hospital system might be a good way to start. They all have patient and family advisory committees/councils.

Q: I have a son that has many illnesses since being a baby that I have always had to advocate for as far as even diagnosis because they didn’t do their job. I have also advocated for my father to get help with the VA and now advocate for my husband as well. I love to help advocate for people but have no idea how to get started or where to find the info needed. Any advice?

Claire: Yes. I happen to be associated with an amazing group of ladies who are professional patient advocates (the kind of work you are talking about). You can choose a specialty like billing, shepherding patients through the system, living wills, etc. Get certified here: https://www.pacboard.org/ and join the network here: https://www.panfoundation.org/

Q: How can I respect family privacy yet continue to share more about my chronic illness life?

Claire: Change the names to protect the innocent. I never even use the genders of my brother’s kids, but they do appear occasionally since they are such a big part of my life. Also, I refer to two of my best friends as Moose and Squirrel (names they chose), and I always ask those people if they are ok with me using them in my posts, and what level of anonymity they prefer.

Natalie: I think talking openly with friends and family and asking what level they’re comfortable with! My family has always loved being in my posts and on my Instagram stories, so no worries there. And many of my friends are also in the influencer world, but I still ALWAYS ask before I post about them or use their real names in social media posts, blog posts, or podcast episodes.

Q: Do you typically approach brands you want to work with? Or did they approach you

Claire: I defer to Natalie on this one, but one thing I would recommend for anyone looking to make influencing into a business (or even if you don’t end up monetizing, like I didn’t) — the Small Business Administration has a program called SCORE that matches entrepreneurs with retired business execs. It’s free, and you can go over business plans, use them as sounding boards, and that’s where I found the small, woman-owned business that helped me develop my blog.

Natalie: I do both! Many companies reach out to me, but I also reach out to a lot of companies. Pitching yourself is an awesome way to connect with companies. Also using influencer platforms like AspireIQ are a great way to find collaborations!