What I Learned About Chronic Illness Coaches While Seeking Support for a New Diagnosis

Being diagnosed with Crohn’s disease left me feeling overwhelmed and alone. It was challenging to find the social and emotional support I needed.

According to the Centers for Disease Control and Prevention (CDC), 6 in 10 U.S. adults are living with at least one chronic illness. This past year, I became one of them.

My diagnosis journey was unlike stories I hear from others in that it was relatively straightforward: I had lived with mild digestive concerns for years. I had shrugged them off until this past spring, when my condition worsened. That’s when I made an appointment with a gastroenterologist.

As a thin, white, cisgender woman with a family history of inflammatory bowel disease (IBD), the odds of my symptoms being taken seriously were stacked in my favor. Had I been fat or Black or transgender, I might not have received the same treatment.

Sure enough, tests were ordered. When tests offered no conclusive explanation for my symptoms, I was scheduled for a colonoscopy.

The colonoscopy revealed that I had patchy inflammation in my lower colon that was consistent with Crohn’s disease. Up to that point, my journey may have looked different from many others living with Crohn’s who spent months, or even years, trying to get a diagnosis.

However, from that point on, I set out on more or less the same path millions have traveled before me.

In the months that followed my diagnosis, my disease became a gravitational force around which the rest of my life revolved. During this time, I turned over every digital rock on the internet to learn as much as I could about Crohn’s disease and what it would mean for my life.

And, of course, I searched social media sites, looking to connect with other people like me.

Most of the accounts I found brought comfort, and I so deeply appreciate those who generously offer a public view into their private worlds of living with chronic illness.

Other accounts made me uneasy, specifically those who have branded themselves as “chronic illness coaches.”

These coaches often have a well-coordinated and aesthetically pleasing grid featuring the self-described coach smiling, dancing, and sharing motivational promises that I could “live independently of my symptoms” or “choose healing.” It became clear that the aim was that those living with chronic illness, like me, would go sign up — and pay — for their courses.

But what are their “courses” designed to teach, exactly? Who are these chronic illness coaches anyway? Let’s break it down, from one spoonie to another.

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Chronic illness coaches: Who are they and what do they do?

Chronic illness coaches are exactly what they sound like — sort of. They are individuals living with chronic conditions themselves who “coach” others navigating the same illness(es).

Many coaches focus on encouraging clients to adjust their “mindset” and their “lifestyle” to meet the new demands of life with a chronic illness.

Most coaches begin their relationships with clients through free consultation calls, which last anywhere from 15 minutes to an hour.

Once a client formally enrolls, most coaches offer some combination of one-on-one calls, group calls with other clients enrolled in the program, self-guided online courses or modules, journal prompts, meditation guides, and more.

Exactly what each course offers or focuses on is entirely dependent on the coach. Many also have private Facebook groups for current and past clients to chat, share struggles, and support one another.

It’s important to mention that coaches are typically not medical professionals. There is no standard of certification or training protocol to become a coach.

There are a variety of online health coaching certification programs that last anywhere from 6 weeks to 6 months. However, without any formal regulation or oversight to be a chronic illness coach, technically all you have to do is say you are one.

If this is starting to sound suspect to you, hang on. Before we get into whether or not what these coaches are offering is beneficial or ethical, let’s first consider why the idea of having a chronic illness coach may be appealing.

The appeal of chronic illness coaches

The nurse practitioner I regularly see at the gastroenterologist’s office is incredibly kind and patiently answers all of my questions when I visit. Still, I’m mostly on my own when it comes to navigating the day-to-day impact of my chronic illness.

It was largely up to me to learn about Crohn’s disease and sort through the tidal wave of conflicting information out there.

From diets and treatment plans to surgery rates and the possible complications I could develop, I was practically drowning in suggestions. I was on my own figuring out all of the things I would need to do differently now that I was sick.

I felt overwhelmed and crushingly alone.

Despite the love and support I received from those around me, I didn’t personally know anyone else with IBD, at least not anymore. That family history of IBD I mentioned: The reason my symptoms were taken so seriously is because of my dad. My dad had lived with ulcerative colitis until he passed away in 2017.

After my diagnosis, not only was I overwhelmed and grieving my former self, but I was grieving my dad all over again.

And still, I was fortunate. I knew a lot more about life with chronic illness because I had seen my dad live it. While the nurse practitioner I see is supportive and treats me with care, I know not every medical professional is as understanding.

It can feel like some doctors, nurses, and administrators think of patients as numbers in a system rather than sick people in need of help. In many ways, I can understand why.

Hospitals and clinics are understaffed, underpaid, and, especially now, after almost 2 years of navigating the COVID-19 pandemic with insufficient support and resources, they’re burned out. I get it.

Still, at the same time, no one chooses chronic illness, and we’re all deserving of quality care, support, and empathy.

I’ve already mentioned how these coaches are not medical professionals, and for some, that might (and should be) an immediate red flag. But I also understand how it might not be. After the treatment I experienced from some medical professionals, the thought of speaking to another patient is extremely appealing.

The idea of speaking to someone who’s “just like me,” who could help me navigate this overwhelming amount of information, felt comforting. This can be even more enticing for people who are still undiagnosed because no one will take their symptoms seriously. The promise of feeling seen and validated can be intoxicating.

The nuanced ethics of chronic illness coaches

The way I see it, chronic illness coaches are operating in an ethical gray area. Is what they’re doing illegal? No. Are all chronic illness coaches preying on vulnerable individuals with the intention of scamming people out of their money? Also no.

I’m certain that plenty, if not most, coaches have the best of intentions and truly feel that they’re helping others. Still, regardless of their intentions, there are three things I would urge you to consider if you are thinking about working with a chronic illness coach.

Do they promise unquantifiable results?

When looking through a coach’s profile or website, it can be hard to nail down exactly what it is they’re selling. I believe that’s intentional. Much like multilevel marketers and other “self-help gurus,” coaches often turn to a lot of vague buzzwords and clichés that sound inspirational but lack specific meaning.

Like marketers, coaches are selling their clients an idea: the illusion of control.

They promote the belief that with the right habits and the right mindset, you can take control of your life once again. They express that with their help, you can get to a “healing state” and “rewrite your narrative.”

As my favorite podcaster Kate Kennedy says about these types of online health influencers, you can’t prove or disprove that what they’re selling works — and if it doesn’t work, well, that’s on you. Maybe you didn’t have the right mindset.

Are their fees exorbitant?

Most of the coaching programs I’ve come across cost thousands of dollars. While some coaches offer “self-guided online courses” or other DIY literature for less, to get the personalized one-on-one coaching, you could be looking at spending between $1,000 to $3,000 for a few months of coaching.

Living with a chronic condition is already so expensive. If you live with a chronic condition you’ve probably found yourself fighting with your insurance company to cover a medication or surgery that the insurance company doesn’t deem as necessary.

Personally, I’ve spent upward of $10,000 this year alone for diagnostic tests, medication, and specialist visits. What are the moral implications of charging an already financially vulnerable group for intangible results?

Do they have formal and relevant training?

I can’t say it enough: Most chronic illness coaches are not medical professionals.

There’s no standard of certification. While some may have a general health coaching certificate from one program or another, there is no regulation by any widely recognized organization or governmental body. Ultimately, it’s not necessary to receive any sort of formal training before providing clients with chronic illness coaching.

Of course, it can be incredibly helpful to connect with other people who understand what you are going through. However, while people living with chronic conditions certainly become experts of their own lived experience in their own bodies, they are not necessarily experts on how that condition may affect others.

Think of it this way: If you’re becoming a parent for the first time, you might crowdsource information from seasoned parents you know. Those with children certainly know a thing or two that you don’t. They could probably offer you some sound advice, but they’re not obstetricians, pediatricians, or child psychologists.

You’d certainly never pay them upward of $3,000 for their insight. It’s worth chatting with them over coffee, but it’s probably not worth it to dip into your savings so that they’ll take your calls.

What to do instead

With the implications of long-haul COVID-19 still not well understood, some experts anticipate “a tsunami of disability” on the horizon. This would mean that the target audience for these sorts of coaches is ever expanding. If you or someone you love is navigating life with a chronic illness and are looking for support, there are resources available to help.

Tap into the plethora of free, online resources

Chronic illness coaches often present themselves as having some kind of knowledge that is otherwise inaccessible to those who are newly diagnosed.

The reality is that a lot of the information and tips these coaches offer is actually available, for free, online. Health media websites and nonprofit groups have a ton of free and accessible articles. Some even host webinars with tips and breakdowns of the latest scientific research.

Find a licensed therapist

People living with physical chronic health conditions are at a higher risk of developing mental health conditions such as anxiety or depression. No matter how well intentioned they may be, an unlicensed chronic illness coach is not trained to support and treat those with mental health conditions.

I’ve seen some coaches describe therapy as “focused on the past” or “just talking,” while coaching “focuses on your future” and is “action-oriented.” This narrative is misleading. It can take time to find the right therapist who makes you feel comfortable being vulnerable and opening up about your feelings and experiences.

Many therapists are well equipped to help you work through the unique challenges of living with chronic illnesses and can help you figure out a treatment plan that works for you.

Seek (free) community

It’s important to remember that as isolated and alone as you may feel, you are far from the only person living with a chronic illness. There are so many other people out there who are living with the same condition as you and are, like you, learning how to navigate its unique challenges on a daily basis.

Many of these individuals are also looking for connection and community. For those with IBD, there’s Bezzy IBD, online and in-person support groups offered through the Crohn’s & Colitis Foundation, as well as peer-to-peer programs.

No matter your exact diagnosis, or even if you’re undiagnosed, there are plenty of communities that meet online or in person that can offer support, tips, or just an empathetic ear when you need it — all of which won’t cost you a dime.

The responsibility of care

The world of chronic illness coaching is growing, but there are still so many unknowns. One big question that I find myself coming back to is: Without any standard of license or regulation, who is held responsible if any of the advice these coaches offer doesn’t help, or worse, actively causes someone harm?

These coaches shouldn’t bear the full weight of these implications alone. It’s important to acknowledge that traditional employment is often inaccessible to people living with chronic conditions. Running an online business can allow people who aren’t able to work a 9-to-5 to still make a living and pay off those expensive medical bills.

The problem is systemic, and so it doesn’t feel right or warranted to blame these individual coaches. There are many gaps that exist in the U.S. healthcare system regarding chronic illness care, and many coaches are doing what they can to fill some of these gaps.

I also believe if we were able to change the healthcare system so that a chronic illness diagnosis isn’t a financial death sentence, we’d see far fewer of these coaches promoting their services in our social media feeds.