"Inward," a graphic design that represents being crushed/crumbling inward by ignoring your own needs and constantly comparing yourself to others and living by outside standards.
Credit: Jennifer Walker

Like many people living with chronic disease, I have struggled with imposter syndrome over the years. Imposter syndrome is characterized by feeling doubtful about the person you are and the skills you claim to have.  For me, imposter syndrome shows up as questioning the amount of pain and struggle I experience. I think “maybe my life isn’t as difficult as I explain it to be” though there is much evidence to the contrary.  

For more than 11 years, starting with rheumatoid arthritis and fibromyalgia, my body has continued to rack up one problem after the other. Reynaud’s Syndrome, small fiber polyneuropathy, gluten intolerance, asthma, Inappropriate Sinus Tachycardia (IST), IBS-D, osteoarthritis in both hips (that will result in surgery down the road), a frozen shoulder, herniated discs, spinal stenosis, a degenerating spine, the list stretches on. I’ve also been diagnosed with many mental health issues, including an anxiety disorder with panic attacks, a depressive disorder, and obsessive-compulsive disorder.  

If anyone looked at my giant laundry list of conditions, they would say this person deserves care; they should push for the best. But I have not (and do not always) do that. 

Unfortunately, I have done nothing when I have had unmerciful flares, joints swollen and red, skin stretched so taught from fluid it looked like it was about to split. I’ve had pain so severe I could not concentrate on television, my phone to play a game, or a sketchpad to draw upon.  I have laid in bed crying because I was unable to walk or change my clothes without help and a cane. I have tolerated it without a word when my hips would get stuck so I could only shuffle. My mind would race imagining where the inflammation was exactly damaging my body.  

All the while, I was internally begging for the rheumatoid flare to be over. I was begging for it to stop pinging off of every other damn disease and syndrome I have so that each stops ratcheting the other up like a room full of hyper children bouncing on the bed. The only mercy in those moments was visualizing cold, black, empty darkness with no body and no pain. But I could not always concentrate enough to even visualize. 

Still, after the pain would subside, and after the several days it would take me to recuperate from a flare, I would begin to doubt myself. Imposter syndrome would swim in my head telling me it was not as bad as I remembered. I got through it alright and did not go to the hospital, so everything is fine. Doubt after doubt after doubt would pile into my brain and fill up my skull after a bad episode — no matter the experience.  

Imposter syndrome for us as patients can show up in many different ways. But the main theme is that we do not deserve good care. We are not as ill as we think we are — pain, damage, disease progression — are all deemed invisible by imposter syndrome. Imposter syndrome tells us that we cannot trust our bodies, we cannot trust our minds, and we cannot trust what we see, feel, taste, touch, etc. We simply cannot trust ourselves. 

In an odd way, my instinct is to reflexively think my life and somehow my pain are not as bad as others. Maybe it’s because I grew up in the Midwest in a very conservative, religious area where I was expected to make myself small and back down to the men around me. I was never supposed to be loud or opinionated, speak my mind or my truth.  

On one hand, I am loud and outspoken and step up when many others do not. I have that ability. Yet, on the other hand, I find myself justifying my situation. Working full-time gives others (and myself) the perception that I don’t suffer. Because I function in the world, it somehow downplays the unbelievable number of diagnoses and the tremendous amount of work it takes to manage my life.  

It dismisses the excruciating nerve pain I deal with regularly and makes me feel like I cannot complain. 

What Imposter Syndrome Looks Like for Me

I created a list of examples describing how imposter syndrome shows up for me, based on some of my own experiences: 

  • Comparing myself to a patient online who has it worse 
  • Downplaying the urgency of my own care until it is much worse than it needed to be 
  • Thinking it could be worse, so I have no right to complain 
  • Dismissing my emotions surrounding my physical/mental health struggles 
  • Believing I do not deserve pain relief because I do not hurt as bad as others 
  • Worrying that a doctor will think nothing is wrong with me 
  • Completely ignoring the severity of my symptoms because I should “suck it up” and be the Midwestern stoic I was raised to be 
  • Believing that a doctor understands my lived experience more than me, or that I shouldn’t complain about my symptoms 
  • Convincing myself that it’s just not that bad, so my body/mental health does not need care 
  • Rationalizing that if my issue was a big deal, my doctor would not have dismissed me 
  • Thinking I do not deserve to get better care 
  • Thinking I am not a real chronic illness patient who deserves to be heard 

Each of these items is linked to an experience. My imposter syndrome has been nurtured by well-meaning friends, toxic family members and toxic friends, and romantic partners along the way. I have had doctors treat me as an imposter or a bother or even a child — reinforcing the insecurities I already felt in my head and heart.  

But the biggest purveyor of damage is me — I doubt that I really need more support or help. I just endure and put up with what is happening, no questions asked. By owning my part in the battle against imposter syndrome, I also own how I may begin to overcome it.  

Overcoming Imposter Syndrome

Early on, when I was scared and overwhelmed by medications, felt dismissed by my doctors, and felt frustrated and very chaotic. I received a piece of advice that has been the biggest source of strength for me over the years. I was told: “No one knows your body better than you — and no one will be by your side to fight for your health your whole life. You are your own best advocate, so trust how you feel. Trust your experiences.” 

This advice set off a light switch for me. My doctor did not suffer all night long in pain, I did. And if I did, then that means I deserve good care. I deserve to be treated like a human being and my experiences deserve to be taken seriously. And what I needed the most was to have people around me who supported me in my health and made my life better. They should help me fight that imposter syndrome. And I should help them. 

I am not perfect. As I mentioned in the beginning – I still struggle with this issue. I will still find myself making that comparison with another patient or thinking that my pain is not that bad. But I also have the battle scars to prove the damage that has been done when I do not trust myself. For those moments when I believe that I am an imposter.  

Working on this issue is a bit more complex than other issues. But these things helped me along the way:  

  • Find a good friend who reminds you to trust yourself regularly — just one person in your corner. 
  • Realize that you pay your doctor for a service — you pay their paycheck like a waiter, a Lyft driver, etc.  
  • Ask yourself: Why push through suffering if/when you have care?  
  • Remind yourself: I live with this disease every day and cannot escape it — that makes me an expert more than those who study it. 
  • Spend time in stillness and some form of meditation daily to better listen to your body’s signals.  
  • Perform a body scan meditation* to better understand the signals your body is sending you.

Beyond this, I have issues I’m working out in therapy to help me give myself credence. But, like everything in life, it’s a process. I have spent far too long not listening to my body and the results were disastrous. Allowing imposter syndrome to come home to roost has only ever brought intensified pain and destruction for me.  

What I have learned is to pay attention to my needs and say to myself, “Yes, my experience and my pain have value. I deserve good care.” 

*During a body scan meditation, you sit quietly, breathing slowly in and out for a few minutes. Then you begin either at the top of your head or at your feet and begin mentally scanning your body, focusing on how your body feels and where it holds tension. Moving from one area of your body to another, you make a concerted effort to breathe out the anxiety and tension. Over time, this meditation technique will help you pay better attention to your body’s signals. It can easily be modified to focus on just one area instead of the full body when you are short on time. 

Want to Get More Involved with Patient Advocacy? 

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.