Invisible pain isn’t absent pain
Karen Maudlin finds joy in being a wife and mother—as well as a hard-working employee. Balancing the responsibilities of raising a daughter and son, Lauren and Matt, while working full time at a pharmaceutical sales job was not always easy, but Karen refused to have it any other way.
Now 51, Karen’s pain began more than a decade ago when she was diagnosed with chronic low back pain, sacroiliac joint dysfunction, degenerative disc disease, spinal stenosis, and osteoarthritis in her joints. Her first spinal fusion was performed in September 2008. Although she was eager to have it done, her internist brother cautioned her to get a second opinion before proceeding. Karen opted for the fusion immediately so she could get back to her life focusing on her spouse, kids, and work.
She returned to regular activities as soon as doctors allowed, with no adverse symptoms, and soon discovered that she was expecting her third child, Olivia, now 10. All seemed to be going well post-surgery and post-baby, until her youngest daughter turned nine months old. The pain returned with a vengeance and was 24/7. She was unable to leave the house; the pain felt like a blowhorn going off in her head.
‘What if’ is a dangerous question
Karen had truly believed that the spinal fusion surgery would be the fix she needed to return back to her normal routine. But when the pain returned, she discovered that her miracle surgery was anything but miraculous. The spinal fusion did not fully fuse, and a revision surgery—along with fusing the level above—would be necessary to prevent additional damage and increased pain.
The need for a revision surgery brought unexpected obstacles. Karen’s first spinal fusion had been filed under her private medical insurance. Like so many others, she questioned using Worker’s Compensation (Worker’s Comp), wondering if the quality of the doctor would be compromised. The faulty fusion flared while working, which forced Karen to hire an attorney to help her get her revision surgery covered. Ultimately, they agreed.
The chaos and confusion left Karen questioning her initial surgeon as well as herself. What if they had done the surgery from the back instead of the front? What if I had listened to my brother about getting a second opinion? She was searching for reasons and answers that just didn’t exist.
Only you define you
It’s normal to question your major decisions, especially when things don’t go as planned. However, Karen learned it is vital not to confuse questioning your decisions with questioning your truth. While recovering from surgery and undergoing rehabilitation, Karen filed for disability. It took three years for her case to be reviewed, and being questioned by caseworkers was confusing and frustrating. Workman’s Comp and Social Security Disability representatives both made her feel like she was lying, her pain was insignificant, and her injuries were not as severe as she claimed. She even started questioning herself and her own perception of her pain and limitations.
In the end, Karen was approved for and granted permanent disability through Social Security Disability. However, she chose not to accept the judge’s decision. Rejecting approval for permanent disability is practically unheard of, but for Karen it was empowering. “If I had accepted the full disability, I feel like maybe I would have accepted the lies too,” she says. “Osteoarthritis and low back pain don’t make me an addict, a criminal, or someone who needs to be judged. I’m a pain warrior.”
Mind over body
Throughout her pain journey, Karen has realized that a positive outlook gets her farther than focusing on the negatives. “Your mind is stronger than your body,” she says. A big part of recovery was accepting that daily pain is her new normal. She may need to pace herself—but that doesn’t have to mean that life stops.
For one thing, accepting the pain didn’t mean that Karen no longer sought treatments. Instead, she was able to find a combination of prescribed medications and alternative therapies that together helped her regain mobility and function. At times she has needed nerve blocks, or opioids; other times acupuncture or medical cannabis have been most beneficial. Accepting that pain would always be a part of her life, and will continue to change, has made it easier to recognize that her treatment plan also will need to change along the way.
Karen has additionally learned that if she pushes her body too far, the pain flares range from chronic aches to severe sharp, stabbing and burning pain. “At least now I know that the flares are temporary and with the right treatment, it will get better,” she shares. Knowing that weather and stress also increase her inflammation and pain adds to the equation. Each day must be assessed individually; the pacing changes to reflect the existing level of pain, energy, stress, and other contributing factors. Karen has discovered so much about her body, her pain, and taking time for necessary self-care.
The next step for Karen was to share what she has learned with fellow pain warriors. She started a local chronic pain group in Cincinnati where others could meet for support and encouragement.
Initially, these gatherings were extremely sad and disheartening. “People would come in with such a low self-confidence because of what doctors would tell them,” she says, adding, “I hate the perceptions of people when the injuries are invisible to others. It’s like you have to hide it, like your pain is a secret.”
Karen encourages group members to share their pain with those they love. “I know it is difficult when anyone has a hidden disability because you don’t know what a person is feeling unless you’re in their shoes.”
Karen has struggled in this area as well. She would tell her husband Mark that her back was killing her so often that she learned it helped him more when she used numbers to express her pain levels, as it allowed him to grasp the significance of the pain.
She wants others to understand that it is OK to ask for help. She knows firsthand that you have to overcome your pride and desire to maintain control. Voicing your feelings makes you stronger and helps others understand more; share your brokenness. Let others into your safe space.
Sadly, Karen knows all too well the heartbreaking ramifications that can come from holding the physical and emotional pain inside. A member of her support group died by suicide because of her pain. While Karen realizes she did everything in her power to help, the loss has left her feeling broken. It is so important to ask for help. “When you hide your pain, others won’t know how to help you. You are not alone.”
Karen Maudlin is a force to reckon with—dedicated to her family, work and her large pain tribe. Through her journey, she has been able to find peace with her diagnoses. While not giving up, acceptance of the pain has allowed her the freedom to live a fulfilled life despite pain—and she wants the same for others fighting against osteoarthritis and chronic low back pain.
“I have learned how to live with pain and I will not allow it to control me,” Karen says.
“Even when my body is telling me something different, I know I am in control of my life.”
U.S. Pain Foundation: uspainfoundation.org
The American Chronic Pain Association: www.theacpa.org/
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