By Fred Diamond

On this week’s Love, Hope, Lyme podcast, I discussed how to live your best life while dealing with chronic illnesses with Living Chronic author Brandy Schantz.

One of the most painful parts of chronic illness isn’t always the physical pain or mental anguish.

I’ve communicated with thousands of Lyme survivors, and many have shared it can be grieving the person you used to be. The athlete, the professional, the parent who could do everything, or simply the person who could make plans without wondering what their body would allow them to do that day.

That loss of identity is something I’ve heard about repeatedly from guests and listeners of the Love, Hope, Lyme podcast. It’s also at the heart of my recent conversation with Brandy Schantz, author of Living Chronic: Conversations That Changed Me, Lessons That Saved Me.

Brandy does not have Lyme disease, but her health journey began with Crohn’s disease and eventually included a severe reaction to Humira that she says caused drug-induced lupus. She later learned she was also dealing with dysautonomia, POTS and small fiber neuropathy, which many Lyme survivors can relate to.

Yet, as we talked, the similarities between her experience and stories I have heard from people in the Lyme community were striking. There were unexplained symptoms, doctors who didn’t always have answers, symptoms attributed to stress, medical trauma and an exhausting search to understand what was happening to her body. Eventually, there was also the realization that she might never completely return to the life she had before.

No Superman

Brandy said, “There is no Superman. No one’s coming to save you.”

For a long time, Brandy believed there would eventually be that one doctor’s appointment when everything would become clear. A physician would identify the problem, prescribe the right treatment and allow her to move on with her life as it existed before she became sick.

That moment never came. Instead, she learned that she needed to become deeply involved in her own care. She read medical research, contacted studies, sought different specialists and learned how to ask better questions. The more information she gathered, the better prepared she felt to advocate for herself when she walked into a doctor’s office.

Many people dealing with Lyme disease will recognize that experience. They may have spent years trying to understand symptoms that didn’t seem to fit neatly into one category or searching for a medical professional who would listen to the complete story.

But Brandy’s Superman lesson has another important dimension. Becoming your own advocate does not mean doing everything alone. She said that while you can’t wait for Superman to save you, “you also can’t go it alone.”

She described the importance of friends with chronic illnesses whom she can text when she is struggling, as well as people who remind her when she begins slipping away from habits that help her.

When doctors stop listening

Interestingly, Brandy’s initial Crohn’s diagnosis was a positive medical experience. At Walter Reed, her physicians considered multiple possibilities, involved specialists and worked together to determine what was happening.

Because she had served in Afghanistan, her doctors also investigated whether something unusual from her time there might be responsible for her symptoms. She described the care as understanding and said she wished everyone could receive that level of attention.

Her later experience with dysautonomia was very different.

Brandy had been an endurance athlete and served in the military. She knew her body. When she suddenly lost her ability to run normally and began experiencing serious cognitive problems, she knew something had fundamentally changed. At one point, she struggled to find words. She described having the correct word in her brain but being unable to pronounce it properly when she tried to speak.

Yet she repeatedly heard that stress might be responsible. One physician attributed her symptoms to PTSD related to her combat experience in Afghanistan despite, according to Brandy, having little knowledge of that experience. Another suggested that perhaps she was simply starting her runs too fast.

Brandy’s response to that doctor was memorable: “I’ve been running longer than you’ve been alive.”

For Lyme patients who have spent years trying to convince someone that their symptoms are real, that story may sound painfully familiar.

Rebuilding trust after medical trauma

Getting answers did not immediately restore Brandy’s confidence in medicine. She described experiencing a severe medication reaction for 19 months before it was identified. Afterward, simply taking medication could trigger fear. If she noticed an unusual sensation after taking a pill, she worried another serious reaction was beginning.

Rebuilding trust required time and repeated positive experiences. Brandy also did something that I thought was particularly useful for people living with chronic illnesses: she began telling new medical professionals directly that she had experienced medical trauma. She tells physicians and nurses that certain things can trigger her and explains those triggers before they begin working together.

She also deliberately sought doctors who respected her experiences and were willing to go the extra mile to understand what she was experiencing.

Brandy doesn’t pretend the trauma has disappeared. She believes some part of it will always be with her. What has changed is her ability to recognize it, communicate about it and develop relationships with medical professionals who understand where her concerns come from.

Grieving the person you used to be

This may have been the most powerful part of our conversation.

Before chronic illness, Brandy served in Afghanistan and was an endurance athlete. Being strong, capable, competitive and physically active was a significant part of how she saw herself.

I asked whether she had grieved the loss of that person.

“I still grieve the person I once was,” she said.

She grieves the experiences she lost, the career she had and her former competitive self. She still thinks about what her life might have looked like if these illnesses had never happened. But Brandy has gradually tried to change the question. Instead of continually asking what her life could have been, she asks what her life can be now.

She described her illness as a forced transition point that also gave her an opportunity to forge a new life. She doesn’t minimize what happened to her. She talks openly about acknowledging the trauma and giving herself permission to grieve. But she also does not want that grief to become the defining story of everything that comes afterward.

That idea may be particularly relevant for people who have lived with Lyme disease for years. When illness lasts long enough, there can be a temptation to measure today against the person you were five, ten or twenty years ago. Brandy’s experience raises a different possibility: honoring that person while also becoming curious about the person you can still become.

You can’t mindset your way out of chronic illness

There’s another side to this conversation that Brandy and I both believe is important. Hope is not a substitute for medical care. Positive thinking does not make a serious disease disappear.

As Brandy put it succinctly, “You can’t mindset your way out of it.”

For years, she remained determined to become exactly the person she had been before getting sick. Eventually, she realized that determination was sometimes preventing her from seeing what was still possible. “I was so intent on being the exact person I was before this happened that I was not seeing who I could be,” she said.

That distinction is important. Acceptance does not have to mean surrender.

After extensive physical therapy, Brandy is running again. She is not the runner she once was and says she can no longer do triathlons, but she has embraced shorter runs and the ability to get outside and enjoy being active without necessarily having to compete. She joked that she is still looking for something else in life where she can be extremely competitive because that part of her personality survived.

The goal became less about recreating the past and more about discovering what was possible in the present.

Turning suffering into purpose

Perhaps the most hopeful part of Brandy’s story is what happened when she began looking beyond her own illness.

She started her podcast and began talking with other people experiencing chronic health challenges. Those conversations made her realize that many people faced the same emotional and medical struggles she did without some of the resources and support she had available.

“When it was all about me and my suffering, it was so hard for me to stand up and get out of it all,” she said. When she began thinking about how other people were affected and how she might help them, she found a different way of understanding her own trauma. Her experience became the catalyst for advocacy, her podcast and eventually her book.

That doesn’t make the illness good. It doesn’t erase what she lost. And it certainly doesn’t mean everyone experiencing chronic illness needs to start a podcast, write a book or become an advocate. Purpose can take many forms.

It simply demonstrates that a meaningful life after illness may not look like the life that came before it.

For Lyme survivors struggling with that transition, perhaps the question isn’t always, “How do I get my old life back?”

Maybe another question deserves consideration: “Given who I am today, what kind of life can I forge next?”

Brandy Schantz’s story reminds us that the answer may take time to discover. You can grieve what was lost while still leaving room for what might come next.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia. He doesn’t have Lyme but wrote his popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” to understand what Lyme survivors go through. The book is available on Amazon and the e-version (pdf) of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.