Chronic pain, an unpleasant signal indicating that something hurts, affects millions of Americans every year. It is a complex experience and differs greatly from individual to individual, even between those with similar injuries and/or illnesses. There are some who live with chronic pain for years without knowing what’s causing it or having any way to treat it.
This is what Konnie Snyder has experienced every day for the past six and a half years.
[“I have no diagnosis. I have, of course, chronic chest pain, so that’s most simply put how I explain it to people,” she said. “I have no label, and it’s kind of funny: people in our society really fight against labels, but because I don’t have a label, I can’t obtain the same kind of support other people have. I feel very isolated. I don’t fit anywhere.”]
Even before this, Konnie had been no stranger to pain. Over the years, she’s had dozens of surgeries, ranging from a major scalp resection (for cancer), to a hysterectomy, to repairs for knee and wrist injuries she sustained during her service in the United States Air Force. Despite these injuries, she always considered herself to be in excellent physical condition. In fact, Konnie told us that exercising was an important part of her identity:
[“Prior to 2014, I would recover [from a given surgery], and I would exercise every day. I used to love lifting weights. In fact, when I was a cadet that was part of my identity. I used to love to be able to max a fitness test, to run as fast and as hard as I could. I was really strong,” she said, adding that exercise was an important stress reliever. Now, Konnie can’t take a single breath without it causing pain, and exercise—what was once an important part of who she was as a person—is no longer feasible.”]
Konnie’s life changed in June 2014. An officer in the United States Air Force Reserves, she was on an active duty tour at that time with her assigned unit at Barksdale Air Force Base in Shreveport, Louisiana. Her husband, however, was in California, where he—an active duty Air Force officer--was stationed at the time. Konnie normally commuted for her military duty, so had flown with the kids from California to Florida (to stay with their grandparents), then driven the 1,000 miles to Shreveport; the plan was to do the reverse upon completion of her active duty orders.
After exercising in the morning on the last day of her active duty orders, Konnie suddenly began experiencing excruciating chest pain.
Five years earlier, Konnie had gone through a bout of pericarditis—inflammation in the protective lining of the heart. While extremely painful, that had responded quickly to a combination of antibiotics, prednisone (a steroid) and Naproxen (a nonsteroidal anti-inflammatory). Because pericarditis can recur, that was Konnie’s first thought about the cause of her pain in 2014.
This time, however, her left arm and the side of her neck and jaw all went numb. Concerned that these could be symptoms of a heart attack, Konnie eventually wound up in the emergency room. Although tests confirmed that she was not experiencing a heart attack, doctors could not determine the cause of her symptoms. As a result, Konnie was told to follow up with her primary care provider upon her return to California, was prescribed some pain medication and some Naproxen, then was discharged.
[“So there I was. At this point, it’s midnight in Shreveport, Louisiana. I’m all by myself in the ER. I’m in excruciating pain, just doubled over, it’s so difficult to breathe. That was the scariest, most isolating experience I’ve ever had. Again, I’m totally new in Shreveport. I have no support network there. I know nobody. My family is thousands of miles away, and I can barely function because the pain is so bad.”]
Fortunately, Konnie’s husband was able to get on a flight from California to Louisiana. He then drove her to Florida, where their children were staying with their grandparents.
[“I could tell then that this was different from the pericarditis that I had experienced in 2009. When we started driving the thousand miles east back to Jacksonville, that’s when we learned that my chest pain responds to low-frequency vibrations. Within about an hour, I am nauseous; the chest pain had me on the floor just crying."]
Complicating matters was the issue of whether Konnie would even be able to fly home to California. The doctors in Florida assured her that she would be able to and prescribed Dilaudid (an opioid) to help with the pain. It did nothing. As a result, she experienced several excruciating flights traveling home and immediately returned to the ER once arriving in Northern California. Konnie still can’t fly because of the effect that pressure (brought on by changes in altitude) has on her chest pain.
Six-and-a-half years later, that chest pain is still there—every second of every day.
[“The entire first year was a battery of tests and appointments. I felt like a human pincushion. I was referred to multiple specialists locally and at Stanford. I underwent several nerve blocks at Stanford to see if it was a pinched nerve in the chest. All the echocardiograms revealed nothing. I was seeing the lead department chair (for all of cardiology) at Stanford. We tried a battery of things for fibromyalgia patients. I was trying massage. I approached folks about acupuncture. We were trying all these different things to see if we could get it [the chest pain] under control in any shape or form.” Unfortunately, nothing seemed to work."]
Over the course of her six-and-a-half years with this condition, Konnie has seen 127 doctors across 40 specialties and undergone dozens of MRIs, X-rays and painful diagnostic procedures. Additional symptoms have surfaced since her symptoms began six-and-a-half year ago, but the underlying cause of her chest pain still hasn’t been identified. Because the cause hasn’t been identified, treatment cannot be tailored.
[“While I’m grateful a lot of terrible things have been ruled out, we still have no idea what’s causing this pain. Because I had had all these other surgeries in previous years, pain had always been finite. I knew it was supposed to go away, and I couldn’t understand why no matter what I did, this pain wouldn’t go away.” As a result, Konnie has had to face the possibility that she could have to live with this chest pain for the rest of her life."]
While it doesn’t relieve the pain, Konnie has found that a combination of Vicodin, physical therapy, eating right, acupuncture, massage, and pain psychology all help improve her quality of life. However, there are still days where she describes her pain to be at a level of “a nine out of ten.” Those days are the hardest because her pain precludes her from doing the very things (running, lifting weights, etc.) that she once found so therapeutic.
Although Konnie says that she would not wish her condition on anyone, one benefit to come from her experience is that she is more able to recognize chronic pain in others, which allows her to connect with them in a way she hadn’t before. She also offered the following words to people who are living with chronic pain:
[“You are not alone. When it is the middle of the night, and you are up with pain that seems almost unbearable, you seem so alone. There are others who care about you. You are NOT alone."]
She continued by stressing the importance of being your own advocate.
[“In the beginning when you are a new patient, you don’t know what questions to ask. You don’t know how to interact with certain people. Almost everyone with whom you interact is well intentioned, but unfortunately there are those who, if you don’t know how to advocate for yourself, you can suffer long-term physical or emotional side-effects.
Get educated on your own health. Take copious notes. When you are in so much pain, sometimes pain can blank-out an experience, especially things that are said. So, I have found that just taking my little notebooks with me to every appointment, jotting down key things, makes it not only more efficient for me, but for that healthcare provider.” These notes augment the spreadsheets Konnie built: a list of the medications tried (and their effectiveness), a list of all appointments and major tests/outcomes, and a list of all the doctors seen (and their contact info). While spreadsheets aren’t everyone’s preferred documentation method, maintaining this kind of information is incredibly valuable when dealing with such a long-term illness and with so many doctors."]
Konnie also emphasized an important point she referred to as “knowing your depression precipice.”
[“You also need to know when to ask for help. I have battled depression, and it’s a very difficult thing to admit that, because to me, I viewed it as weakness initially, but it wasn’t. What I have learned is that it took a lot more strength to identify that vulnerability and to address it. Now that I have battled it and come back from that precipice, I know where that precipice is. I need to be aware of it, and when I go through traumatic, tumultuous times, it can be a little overwhelming. So just knowing my precipice is extremely helpful, because then I can take the appropriate countermeasures."]
Despite these struggles, Konnie has managed to remain as positive as possible. She had the following to say when asked if she had any final thoughts about having been interviewed for this series, and she said that she was honored to have been asked to share her story with the public:
[“That is enough to just be able to share with people the difficulties that are accompanied with pain and that so many people think that just because I choose to smile, it can’t be that bad. I want to help educate people on the fact that it’s a choice every day [to smile despite the pain]. Don’t underestimate someone’s pain, whether emotional or physical, just because they’re choosing to smile."]