Breaking the Silence: Autoimmune Diseases and Disenfranchised Grief

You never really know what’s going on underneath the surface.

I’ve been posting consistently on Substack for about 14 months and today’s blog is one that I’m most proud of because it spotlights a challenge that some of my clients and many of my friends and colleagues encounter and don’t get to talk about too much: autoimmune disease. 

Unfortunately scientists and doctors are baffled by why bodies will decide to turn on themselves as if it's the enemy. And this affects 1 in 5 Americans, with 75% of those affected being women. 

Because there’s so much ignorance and misunderstanding about auto-immune diseases, many people who live with them choose to not disclose for fear of being judged and having their jobs, careers,  professional growth trajectory, income, and community impacted. And that’s just the tip of the iceberg.

In today’s blog, I interview Amy Behimer, a Doctor of Pharmacy and a Nationally Board Certified Health and Wellness coach trained in both conventional and lifestyle medicine. She lives with multiple sclerosis and answered my questions about auto-immune disease, dis-enfranchised grief, and bias with vulnerability, grace, and wisdom. 

Please note that this week, the blog is just a blog. There is no audio/video companion.

---

Not everyone can or chooses to wear their struggles on their sleeve. Sometimes, folks go through incredibly tough times but keep it to themselves. Why? Well, it could be the fear of judgment, the need to process what's happening, or simply a desire for privacy. 

Let's take Brandon Tartikoff, for example, the President of NBC back in the 1980s. He faced Hodgkin lymphoma, went through treatment privately, and no one knew. This was the man who gave the green light to iconic shows like Cheers and Seinfeld. He didn't make any announcements about his diagnosis, but it was very real.

Now, shifting gears a bit, let's talk about folks dealing with autoimmune ailments. These conditions exist in a realm entirely different from contagious diseases or cancer. They're like never-ending house guests who just won't leave, and are deeply misunderstood and frequently minimalized. 

It's crucial to remember that just because someone's struggles aren't immediately visible, it doesn't mean they're not dealing with their own battles. It's a reminder that a little understanding can go a long way in making the world a more compassionate place.

The Hidden Realities of Autoimmune Diseases

Here are a few sobering facts from the American Autoimmune Related Diseases Association about autoimmune diseases that you may not know:

• Nearly one in five Americans has an autoimmune disease.

• Of the 50 million Americans affected, a whopping 75% of them are women. 

• Oddly, science can't quite fathom why our immune system takes a wrong turn and attacks its own bodies. 

Dis-Enfranchised Grief: What is it?

Why should you care about this? Well, you or someone you care about might be one of the many who have an autoimmune disease. And they may be experiencing what we call disenfranchised grief. Dis-enfranchised grief is a term coined by bereavement expert Kenneth Doka to describe any type of loss that is not openly acknowledged, socially validated or publicly mourned.

Now, I didn't truly grasp the weight of that term until I started working with a few clients who shared their experiences of having an autoimmune disease. They'd lost a lot – their sense of self, their place in the community, financial stability, the simple act of being heard and understood, and much more. They came to me seeking career guidance, and together, we realized that it wasn't their skills, abilities, or ambition holding them back. It was society's misconceptions and outdated norms.

To give all of us a glimpse into the world of autoimmune diseases, I had the privilege of inviting Amy Behimer to share her insights with our Moonshot community. She's graciously opened her heart and mind to us, shedding light on an experience that affects more people than we might realize.

Amy, like me, is a multi-hyphenate, but much fancier. She’s a Doctor of Pharmacy and a Nationally Board Certified Health and Wellness coach trained in both conventional and lifestyle medicine. She lives with multiple sclerosis and walks her talk on her mission to help people with autoimmune disease take control of their health so they can feel better today and worry less about tomorrow. 

I so appreciate how Amy believes in using science, real-life strategies, and self-insight to support people in living their most full and energized life, autoimmune disease and all. Her expertise is in helping people master the mindset and the skillset to make and break habits in the areas they want most, which starts with assessing energy gains and energy drains in everyday lifestyle choices.  These include nutrition, movement, rest & relaxation, incorporation of “good stressors”, positive mindset, and the healing power of connection.  I highly recommend her podcast The Habit Hub for AutoImmune Health.

The following interview with Amy was recorded,  transcribed and edited for clarity. 

What is an autoimmune disease? 

Simply put, an autoimmune disease occurs when your immune system, which is supposed to protect you from harmful invaders like viruses and bacteria, gets confused and instead of going after the bad guys, it attacks your own healthy cells, tissues and organs.  The immune system loses the ability to tell the difference between the two.  This leads to various health issues, symptoms, and diseases depending on which part of the body is under attack and mistaken as foreign.

Is an autoimmune disease considered a disability? 

My thought is that an autoimmune disease does not always equal disability.

The definition of disability is a physical or mental condition that limits someone in some way. That could be movement, activities, or senses. There absolutely can be people who are living with autoimmune disease that do not identify as having a disability while others may consider themselves disabled in one or more of the ways I mentioned.  I've even heard some people describe themselves as able-bodied with a disability, which expresses a limitation of a non-physical nature. 

Physical disability is what comes to mind first for me, but I think that’s in part because that is the limitation I’ve hyperfocused on as a person with multiple sclerosis (or MS).  For others it may be different depending on their lens.  We probably all can benefit from remembering there are disabilities that are not seen by others.  Sometimes kept invisible with intention and sometimes not.

I think it's important for people to understand that disability may look different for everybody. I live with MS and now, almost 12 years into my diagnosis, consider myself to have a physical disability, but that hasn’t always been the case.  I imagine others with autoimmune disease may have a similar story.  

Like with any label, we get to choose to accept it.  It’s a personal choice to identify as disabled or having a disability.  Some may have a disability that impairs their energy or cognition, especially if they are not able to work or are limited on how they would like to be working.

I only recently have begun exploring the use of the word disabled and whether or not that’s a label I carry or an identity I own.  While I do consider myself healthy and thriving with my diagnosis, it’s gotten harder to ignore that my physical abilities have been impacted since those early years.  As a small business owner and an employee in a large health care system, I’ve had the opportunity to lean into diversity, equity, and inclusion (DEI) training and have uncovered my desire for the disabled population to be heard and advocated for.  Noticing pretty clearly that I was speaking up for myself as well.

We can learn a lot about ourselves by paying attention to what stirs us up, or by paying attention to when we use the terms love or hate when we're talking about things. I was getting stirred up when I noticed that people living with disabilities weren't really being talked about in the conversations around DEI.  And I found myself for the first time saying “we” and “I” when it came to people living with disabilities. 

What was that like for you?

To be honest, it was incredibly vulnerable.  And still is.  When I speak up as a disabled person, people who know - and absolutely love - me often respond by telling me with their words or their facial expressions that they don’t consider me disabled.  And I find myself almost comforting them that it is an identity I am choosing to embrace.  After years of trying my best to mask any hint of a limp or a dropped foot, I’m encouraged by the intentional thought that maybe, just maybe, somebody needs to see more people like them.  Whether those people have visible or invisible disabilities.  If stepping into my reality in public can bring a moment of comfort for someone who could use it, it’s totally worth it.

This may seem like a super basic question, but I have experienced ignorance and bias that if a disability isn’t visible, then it’s not real. What does it mean to have an invisible disability? 

As the name implies an invisible disability is one that others can't see. For example, some days I can walk in a way that looks “normal.”

We really are all icebergs, meaning we see such a small percentage of what makes up a personality.  Our thoughts cause our feelings and how we feel drives what we do and don’t do, or our actions in the world.  Those actions are the only part of the iceberg that others see.  But our personal reality is the whole package.  The thoughts, feelings, and actions.

I believe that all humans experience a 50/50 split of positive and negative emotions.  Nobody is getting by without their own version of 50/50, whether they have a disability or not.  Some may be wondering why I choose to think (and even embrace) that half of life isn’t sunshine and daisies and the answer is because it brings me peace to allow space for the tough stuff in life without making it mean anything has gone wrong.

When you think about it, that’s how nature works.  Flowers bloom and go dormant.  We have day and night.  We enjoy the sun more after a good rain.  I find a lot of peace in dropping the expectation that I should feel good all of the time or that my body should be functioning in a way that is different than it is.  That doesn’t mean I don’t keep doing the things everyday to help it heal, the habits that do a mind a body good, it just means I practice radical acceptance of what I cannot control.

All of that to say, what a world it would be if we all led with compassion and gave others the benefit of doubt that they were doing their best, going through their own versions of 50/50.  Visible or invisible disability.  Or no disability at all.  

How did you come to know about your autoimmune disease?

I was diagnosed with my first autoimmune disease when I was 16.

I was hanging out on lakes, getting lots of sun like 16 year olds do and I started noticing white patches on my face and hands.  Which turned out to be vitiligo.  My second autoimmune diagnosis was Graves’ disease, which is a hyperactive thyroid, and that came about in my mid-twenties. By that point I was definitely getting concerned. I seemed to be collecting autoimmune diseases. 

My body was talking to me, but I wasn’t in a space to hear it until I was diagnosed with multiple sclerosis at 27. It wasn't until then that I stopped to really listen and explore what it was trying to tell me.  The first two diagnoses, in my mind, weren’t a “big deal” because one was affecting only the appearance of my skin and the one was adequately treated with a pill.  And a third diagnosis of inflammatory bowel disease was thrown in the mix.  MS, on the other hand, brought with it a fear of losing my ability to walk and a threat to my mobility and independence because of what I knew about it at that time.  My mind jumped to the worst case scenario which was painful for me in a lot of ways, but also served me because it got my attention and gave me the motivation I needed to rethink the way I was living my life.  

The MS diagnosis was a turning point in my life in a lot of ways.  There’s a before and an after.  It’s been almost 12 years and while I still have an autoimmune disease, I spend a whole lot more time focusing my attention on the ways I am creating autoimmune health.  The food I choose to eat, the ways I choose to move my body, the connections I choose to prioritize, the ownership I take of my thoughts and my feelings, the good ways I choose to stress my body, the ways I make rest a reality, and so much more.  

I’m celebrating the absence of any and all evidence of three out of four diagnoses I’ve received.  I’m getting to the root of what my body is trying to tell me each and every day.  The vitiligo is still there, but it's not spreading. The Graves’ disease is in remission and the inflammatory bowel disease is also undetectable on biopsy.  

What are the losses that you’ve experienced as a result? 

Laverne, thank you for helping me embrace this even more.  I’m so quick to make room for what I’ve gained and I need to ensure I’m giving air time in my life to the loss. Loss is so personal. And I have absolutely experienced losses, and still do.  And something that felt like a loss 5 years ago can now feel like a gain.  But life keeps going and new losses come.  I credit discovering coaching for my awareness and acceptance around this.  

I used to think as long as I am still walking, I haven’t lost anything.  Now I know that isn’t true for me.  From day one, I lost the ability to run without the possible scenario that one day MS may keep me from running.  Since then I’ve lost the ability to run.  I've lost the ability to take long walks.  I've lost the ability to visit national parks with my family and set out on long hikes that my pre-MS body loved.  I've lost the ability to not have to think about how many steps it will take to get somewhere. I've lost the ability to plan any travel I want without taking into account the physical toll that it'll take on my body to be out of my routine for multiple days in a row.

Many of my clients have experienced a loss of identity as a result of career setbacks or life events. How has your identity been affected by your MS diagnosis? 

I identify as many roles and I’m guessing most of us can relate. I’m a wife, friend, daughter, sister, aunt, pharmacist, coach and MS-er.

MS is absolutely one of those identities that I've carried since my diagnosis, but the meaning of it has done a 180. At first it was a negative thing I felt I had to overcome. Through my own inner work I've set out to change my belief that “I shouldn't have MS” or “my life will be worse with MS.”  Successfully shifting that belief to “my life is no worse because of MS” and even recently “my life is better in some ways because of MS” has allowed my identity as a person living with MS to be a positive thing.   

That shift has given me confidence to set my sights on shifting to a new one, which is exciting.  And to be honest it feels far away but I’m doing the work to get there.  And that doesn’t mean that some days the old thoughts don’t sneak back in, but I can notice them, name them, and normalize why they would resurface.  What we resist persists, so when I don’t demand they leave and instead practice compassion, they seem to lose interest and move along.

So back to how my identity has been affected.  I'm still a person who lives with MS, but that feels positive more often than not. And while we're talking about identity, I never would've discovered the world of lifestyle medicine, habits, and functional medicine and I never would've become a coach!  It’s opened the doors to new identities as well.

How have those losses been acknowledged or validated by you or your work community? What has that been like for you? 

I'm now reflecting that it's never been acknowledged by me or my work community because I never gave it that space. I've always wanted to prove that my work will never suffer because of my MS.

Early on I made a decision that I was never going to miss work for an “MS Day,” because I never wanted others to think I couldn't handle it or shouldn't be doing the job. It's wild to look at that thought now because as a leader, I would never treat any of my people that way.

Just recently, I had one of my team members say, “You know, sometimes I forget that you have MS.”

I used to love when people would say that. I used to really strive to show up in the world as if I didn't have MS. To fool people and walk “normal.”  Now I realize that I no longer want that.  It’s only a good thing for people to forget I have MS if I believe it makes me less than in some way.  And that’s my new dream belief I mentioned earlier.  “MS in no way makes me less than.”

How has having an autoimmune disease affected your career? 

I started making decisions throughout my career through the lens of what different roles at work required of me.  Specifically my physical ability. In retrospect, that wasn’t a bad thing. It guided me into leadership earlier than I originally planned which is actually something that I love.  It has allowed me to lean into my strengths.

Thinking even further into the future, and being the planner that I am, my wheels started turning on ways I could keep working, keep serving, keep contributing if going to work in a large hospital became hard to do physically.  That’s how I discovered coaching.  And one decision led to the next, then the next and now I have a career as a coach.  I was made to do this work and help others.  So my autoimmune disease is part of my secret sauce in how I help others live well with autoimmune disease.  I get to help others create health and happiness in their body and in their mind no matter what their diagnosis. 

Clearly it will likely continue to affect my career and I’m curious to see how.

One of the challenges that my clients with autoimmune disease have is whether to disclose or how much to disclose to their professional colleagues. What are your best practices?

This is such a personal choice and it’s something I help my clients with as well. When I was diagnosed, I did not disclose it to my coworkers at the hospital for the first couple of years.  I told myself it was out of fear that people would worry about my performance, but in reality there was a component of embarrassment or shame. 

I remember my neurologist saying that I didn't need to disclose, but pointed out that I am a pharmacist and have access to medications that, if abused, could be mistaken for me being under the influence.  So, if MS had me walking crooked or swaying a bit some days, it was something to consider because I wouldn’t want to set off any red flags. 

I share that example just to point out that there could be certain scenarios that may help you decide whether it's a good idea to share or not. But the big key with this is making a decision either way, and feeling confident about it.  Liking your reasons is key.  There is a weight that we carry around, fatiguing us, when we have unmade decisions. Making the decision can feel hard, but it’s like lifting a heavy dumbbell once.  It’s done and you’re stronger after.  That unmade decision is like carrying around smaller dumbbells all day long, draining our energy.

There’s a big difference in your energy when you are not sharing because you decided not to and feel confident in that decision versus not sharing because you haven’t decided whether or not to share and feel unsure or fearful, not clear on your reasons why.  One way to help you decide is to make a list of all the reasons you would disclose and all the reasons you wouldn't disclose, then study both lists and decide which list of reasons you like better.

In some of my clients’ work situations, it’s simply not possible to disclose without experiencing bias. However, not disclosing has a ripple effect of stress. For example, if my client experiences a flare up and can’t meet a deadline. But in revealing why, her boss may lose confidence in her ability to deliver in the future so gives her less challenging assignments. It also takes her off track for a promotion. What insights do you have around this challenge? 

The biggest takeaway for me is that other people are watching how I treat myself. They will follow my lead. So if we're worried how someone thinks about us, I believe it's because there's a part of us that believes whatever their thought is as well.

An example that I heard from my coach years ago is if somebody said to me, “Amy, I don't like your blue hair.”

I would not take on that opinion at all because I don't have blue hair. That's almost ludicrous to tell me you don't like my blue hair because I don't have blue hair. There's not an ounce of truth in it.  

But if someone says to me, “Amy, I think that you don't have what it takes with this autoimmune disease to do the job,” there may be a part of me that worries about that. And so that will feel a lot worse. 

There is a Michael J. Fox documentary released this year and it sticks with me. Somebody asked him, “How do you handle if someone pities you?” And he said, “When people pity me, it just bounces right off, because I’m not pitiful.”  And that's just such a strong lesson for all of us to remember that we can choose to have those fears or concerns or thoughts from other people bounce right off if we build the belief in ourselves.

In listening to your podcast, I’ve learned a lot about how habits can help people live well with an autoimmune disease. At the same time, I have to imagine that there are on-going losses as a result. How much permission are people with disabilities given to mourn? And while everyone’s experience of grief is unique, what might be some of the more common losses?

I don't think there's enough permission given to mourn.

I've often talked about unprocessed grief as an area where we experience energy drains and I coach people through those. Laverne, you've helped me learn that this is an evolution in my coaching and personal life that I really want to experience and lean into, which is giving more permission. Some common losses I've seen in clients are the loss of the ability to work a full day without mentally fatiguing or to work a full day without physically fatiguing,

Losing the ability to run or walk, losing the ability to have children or to be a mom.  Another loss that feels so huge is the ability to eat the way they always have, even though they recognize it’s not helping their body heal. 

For me that last one is a loss that has turned into a “Thank God I am no longer eating some of the crap that I spent so many years eating.” Yet another example where what may feel like a loss at one point in time may actually be turned around in the future.

If I think someone that I’m working with may have an autoimmune disease, how do I express empathy and compassion without violating someone’s privacy?

Empathy is not that you've been through the same thing as someone else, but that you've experienced the same emotion. So I would say the common emotions that I've experienced throughout my life that are shared by most others with autoimmune disease that I work with are fear, loss, uncertainty, disappointment, struggle. Connecting with someone may mean sharing that you’ve felt a similar emotion that they are feeling.  Maybe it's not with a diagnosis but with something else in your life.  I've also found that being really honest and saying, “I don't know what to say,” or maybe “I'm here for you, whatever that may look like” can be really valuable.

And if someone does disclose to me, how do I stop myself from interacting with them differently? For example, if we are partnered together and I have concerns about their ability to be a full team member?

Again, being honest if you're able and asking how you can support them. Sometimes just knowing you can be transparent about what’s going on in your world with another person is such a gift.  And being willing to offer that gift right back to your coworkers.  Be a soft landing spot for whatever they are carrying into their work day.  

If you would be willing to share, what does your mourning look like? 

It's definitely a cycle for me and the few in my inner circle know that cycle well.

It includes days of tears and “why me” followed by days of smiles and “try me.” But always I include humor. I call it out. I'll say, this is a down day. And to be fair, I try, with that inner circle to call it out when it's a good day, too. I like to give equal airspace to the good and bad, and they can remind me that there are good days when it’s sometimes easy to forget. 

I mentioned before the idea of 50/50 or that life will be half positive emotions and half negative emotions. Having that expectation of life really brings me peace. It stops me from trying to get out of the 50% that's negative. Once I stopped making it a problem that I felt a little uncertain or I felt bummed that I couldn't be walking or I felt anxious about the future, it stopped feeling like something I had to solve.  And honestly, it ends up that I feel higher than 50% of positive emotions. But lowering my expectations to that 50/50 really was the start of the work that helped me to embrace the ups and the downs.

The parable of the second arrow is a Buddhist parable about dealing with suffering more skillfully. So anytime we suffer misfortune, two arrows fly our way. Being struck by an arrow is painful, but being struck by a second arrow is even more painful. And the second arrow is the suffering we add. The first arrow is the misfortune or the circumstance of life that is out of our control.  

The diagnosis or the symptom or [insert crappy life event here].  The second arrow is what we make that mean or how we choose to think about that that can add suffering. Negative emotion isn't really what causes suffering. It's resisting the negative emotion that does.

What else would you like Moonshot readers to know about achieving career dreams when diagnosed with an autoimmune disease?

I would encourage everyone to allow space for your career and really all dreams to look different than you once thought it would look.  To change and evolve and grow.  And leave open the door of possibility that change may not be a bad thing. Go back to your values and make decisions through that lens.

For me, a core value is growth and connection. And I never entertained not working and having a career, even during my lowest times with my disease.  Instead, I asked myself “what are other ways I can work and serve and contribute if walking is hard.”  That’s when I started exploring coaching, which I can do virtually.  And our brains love to answer the questions we give it. It loves to solve problems. So if we can feed the brain higher quality questions, it will get to work looking for those higher quality answers. So a few other high quality questions to consider are “How do I want this diagnosis to impact my work?” or “Who am I with this diagnosis and how can I make it work for me?”

The right question for you may take some exploration and digging but you’ll know it when you find it.

JOURNAL PROMPTS

To build off of Amy’s thoughtful questions, here are five journal prompts to help you deepen your understanding and relationship with facing challenges. 

1. Reflect on a time when you faced an unexpected challenge or obstacle that wasn't immediately visible to others. How did you handle it, and what did you learn from the experience?

2. Consider any losses or changes you've experienced in your life, whether related to health, career, or personal identity. How have these moments shaped your perspective and priorities?

3. Have you ever encountered a situation where you had to decide whether or not to disclose a personal challenge to others, and how did you make that decision? Reflect on the impact of your choice.

4. Explore the concept of "invisible disabilities" and how society often perceives or misjudges them. Have you ever had assumptions made about you due to a hidden aspect of your life? How did it make you feel, and how did you respond?

5. Take a moment to consider your career dreams and goals. How have you adapted or evolved in pursuit of your aspirations when faced with unexpected challenges or changes in your life?

ADDITIONAL RECOMMENDED RESOURCES

If you are someone who lives with an autoimmune disease or has an invisible disability, here’s a link to ways in which to learn, follow and work with Amy Behimer. Also three resources that may be of additional support to you:

• Loving What Is by Byron Katie

• When the Body Says No by Gabor Mate

• The Autoimmune Association

If you have other recommendations for resources, please drop a comment so others may learn from you. Please note that I’m not providing links to the two books because I want to encourage you to borrow from your local library or purchase from an independent bookstore. 

🙌🏾  Questions? Would you like additional support in accessing resilience? I offer private coaching sessions as well as in-person and virtual group work. Reach out directly here to set up a complimentary consultation.

If you’re resonating with what you’re reading, please consider subscribing. What’s that mean?

🙌🏾  You’ll receive regular emails (with lots of heart and a bit of humor) that share a tool or insight from my coaching practice.

🙌🏾  Typically the blog and blogcast will have a question at the end to provoke thought that supports you in your growth.

🙌🏾  Updates on offerings, free stuff, recommendations, referrals.

---

My blog aims to help people achieve their ambitious goals, their moonshot if you will. 😃 Oftentimes, though, we neglect an essential aspect of pursuing our dreams: the inevitable missteps, obstacles, and failures that come our way. Failing to acknowledge and process these losses properly can lead to imposter syndrome, burnout, low self-esteem, confusion, and even result in completely abandoning our dreams. 😟  That's why I strongly advocate for embracing grief awareness (along with other tools like values identification, knowing your why, sharpening executive function, habit forming, and more.) By doing so, we can effectively navigate challenges, regain motivation, and hit our moonshots. ✌🏾️ If you know someone who could benefit, please share this newsletter or recommend me to them. 🙏