8 Tips for Managing Chronic Pain From a Boston Marathon Bombing Survivor: ‘Never Give Up Hope’
Key takeaways:
An unfortunate series of life events, starting when she was 7 years old, led to a lifetime of pain for Lynn Julian.
She says too many doctors have shrugged off her symptoms, so she’s learned to rely on herself for improving her health.
She's also found that support groups, clinical research, and self-care help.
Lynn Julian has had more than her fair share of bad luck.
A series of misfortunes have led to a lifetime of pain for the 45-year-old Boston woman:
When she was 7 and living an hour outside Lyme, Connecticut, she was bitten by a tick. Her case was likely one of the first reports of Lyme disease, a tick-related illness named for the region where she grew up.
As a musician, she once tripped on a cord crossing the stage. She took a fall that left her in agony and grasping for years for a diagnosis.
As a spectator near the Boston Marathon bombing in 2013, she suffered a concussion, hearing loss, ringing in her ears, and severe post-traumatic stress disorder (PTSD).
In 2018, while on a cruise to a tropical area, she deboarded to enjoy a local stop and was immediately caught in a rainstorm. A swarm of insects followed, leaving her with bites that either led to new conditions or caused old ones.
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“Never a dull moment,” Lynn laughs, about her life.
In addition to the injuries suffered in the marathon bombing, she lives with chronic migraines, chronic neck pain, fibromyalgia, severe allergies, and a connective tissue disorder called Ehlers-Danlos syndrome. She has also spent time in a wheelchair, unable to walk.
With such a traumatic history, she has gathered tips for dealing with chronic pain.
1. Address pain before it becomes chronic
Lynn differentiates between sudden-onset pain and chronic pain. Sudden pain would be someone stubbing their toe or developing a headache, she says. Chronic pain is persistent, like damaged nerves that continue to ache or recurring migraines.
“If you don’t address sudden-onset pain in the body,” she says, “it can, and very well will, become chronic. And then it’s very difficult to address it.”
“There's never going to be a great time to go to the doctor. There’s never going to be a great time for physical therapy or testing or unpleasant medication. But if you don’t address things quickly, the pain may become chronic, and then you’re stuck with it — for life. And wouldn’t you much rather give up a little of your time now and live with something for the rest of your life?”
2. Do your research so you can advocate for yourself
Many times, Lynn has felt that doctors dismissed her symptoms. For example, after her stage fall, she went through several doctors before finding one who diagnosed her with perilymph fistulas, a hearing sensitivity that can cause dizziness and intolerance to motion.
“At that time, I thought doctors were heroes,” Lynn says. “I thought doctors were godlike and they knew everything there was to know about these conditions. And none of this is true. They’re human beings. They have flaws and limitations. You need to be your own advocate. You need to not assume that doctors know everything about your condition. Don’t assume that they care as much about your pain and your health issues as you do. No one cares as much as you do.”
Lynn often visits advocacy websites for conditions that match her symptoms. She also reads scientific papers and tries to stay on top of new treatments.
3. Approach talking to your doctor like a job interview
When it comes to talking to her doctor, Lynn has learned to stay calm and arrive for visits with three to five specific things written down for discussion. She’s found that doctor appointments go better if she’s not seen as being “too emotional.”
“You have to be very careful in how you advocate; you have to keep your voice monotone,” she says. “Do not get emotional in any way. And it’s hard when you’re in chronic pain. I have been in offices on bad days crying, just slumped over on the table and crying every single time without exception. They tell me it seems like a mental health issue and send me back to the therapist that I’m already seeing.”
Lynn often takes her partner, a man, to her appointments — even though she resents it.
“If I bring a man with me to the appointment, I get a lot better treatment,” she says. “Are you kidding me? That is a horrible thing to say.”
4. Ask for and accept help
Lynn was particularly reluctant to accept mental health counseling her doctors offered because she felt it invalidated her symptoms and conditions. But her injuries were affecting her mental health, and she realized she did need therapy.
“Don’t pretend that you’re OK when you’re not," she says. “Accept help when it’s offered.”
Refusing help is a way sudden-onset pain becomes chronic, she says.
“It’s not a weakness to accept help,” she says. “I tell people, ‘It’s courage.’ It takes courage to admit that you need help, and it takes bravery to accept it.”
5. Go easy on yourself
As a person who has been involved in physical therapy, ocular (eye) therapy, speech therapy, vestibular therapy, mental health therapy, and more, Lynn knows healing can be a full-time job.
“So, you have to re-evaluate what is most important in your life and just make time for that,” she says. “You may have to forgive yourself and understand that you can’t have a full-time job anymore. And it doesn’t make you less of a person. It doesn’t make you less valuable to the world.”
6. Be willing to experiment
Lynn likes to volunteer for clinical trials. For those who can’t find treatment or have tried all the treatments their doctors have recommended without success, experimental treatment might help, she says.
She has found clinical trials for acupuncture, massage, hyperbaric oxygen therapy, and other chronic pain treatments.
7. Prepare a ‘to-go bag’
Lynn recommends keeping a lightweight nylon bag on hand filled with everything you need for a hospital visit — such as magazines, a cell phone charger, snacks, water, and a blanket.
“Your body’s more fragile when you live in pain,” she says, “and flare-ups are more easily triggered for you than a healthy person.”
8. Find ways to prevent flare-ups
Lynn says anything she can do to make her pain more tolerable — even if it makes it only 5% better — she does it. Epsom salt baths, massages, and acupuncture are some ways to help avoid possible flare-ups. Other ways include physical therapy, ice packs, and heating pads. Exercise may also help make it easier to handle chronic pain.
“Whatever you can do to prevent your pain from flaring up is much better than treating it after,” she says. “No, it’s not going to cure you, but it might make you feel 10% better.”
Lynn says telling her story and advocating for others has been essential to her recovery. She volunteers for several foundations, including the U.S. Pain Foundation and Everylife Foundation for Rare Diseases. She often advocates for others and helps with charity events.
“Telling my story, and volunteering, have been a huge part of my resiliency and recovery from wheelchair to walking again,” she says. “If I can do it, so can you. Never give up hope.”
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