With unbelievable strength in the face of denial, this young woman inspires
Karen Richards is not shy about speaking out against the injustices plaguing children with pain. Having lived with pain since first grade, she is determined to use her experiences to help people. “No kid with a rare disease should have to suffer needlessly due to lack of care,” she says.
Now 15, Karen was just seven years old when she broke her right foot. After the cast was removed, pain persisted. An orthopedist believed her symptoms mirrored reflex sympathetic dystrophy (RSD) and wanted her physical therapist to treat her as though she had the chronic neurological syndrome until proper diagnosis could be established.
RSD, also referred to as complex regional pain syndrome (CRPS), is caused by a malfunction of the nervous system. For reasons still not understood by medical professionals, nerves misfire in people with RSD, sending constant pain signals to the brain.
The key to recovery is an early and accurate diagnosis, as well as appropriate treatment. Karen’s physical therapist took swift, proactive measures to get her walking within a few months.
Despite their best efforts, pain persisted
But a year later, extreme pain returned after a bone contusion to her shin. Unable to bear any weight on her leg, Karen used crutches for over six months. She faced skepticism and judgment from those treating her: “Except for my second grade teacher—who became my advocate—no one believed I was in pain,” says Karen. “My doctors, who should have helped me, did not. I was suffering and no one was coming to my rescue.”
With more health problems arising, Karen’s parents moved their family from their Texas home to Boston to have access to what they believed would be better medical care. Karen began physical therapy for her shoulders, which kept dislocating. Double-shoulder casting made it impossible for her to do anything on her own: she couldn’t eat, use the bathroom or dress herself without help.
Sadly, and all to common for many kids in pain, Karen’s doctors questioned her complaints. Some speculated she also had Ehlers-danlos syndrome (EDS) but the majority said she was an attention-seeker who suffered from conversion disorder. She faced judgment everywhere.
An unbelievable turn
Karen’s health took a rapid decline in April of 2010. She woke to ringing in her head and impaired vision. Clammy to touch, she kept telling her parents she was hot and very confused. Karen tried to walk, but five steps felt as if she had run a marathon. When she started having difficulty breathing, her parents rushed her to the hospital.
Karen was placed in the ICU, and what occurred next is appalling and heartbreaking: Hospital security escorted her parents out of Karen’s room at the doctor’s request. She screamed for them to stay; instead, a nurse arrived, telling Karen that her “parents had left because they didn’t want to deal with her silly antics anymore.”
Karen knew it was a lie. She screamed for her parents, refusing to take any medication until they returned. She started having seizures, but the nurses and doctors said she was exaggerating these attacks. Terrified, Karen did everything in her power to stay awake throughout the night, waiting and pleading to have her mom and dad.
Unbeknownst to Karen, her parents were being held against their will by hospital administration. Told they were enabling their child to “invent” a pain disorder, Karen’s parents were given two choices: sign a legal contract sending their daughter immediately to a mental hospital, or face legal action from the hospital for child abuse and neglect.
Her parents knew Karen was physically suffering. However, they also knew the repercussions of fighting the hospital. Unwilling to chance losing their daughter within the fractured system, they signed the document which stated their daughter suffered from conversion disorder and would be sent to an outpatient psychiatric facility for eight weeks.
Fear, betrayal and change
Karen felt betrayed. The next two months were horrific: Each day she was belittled, humiliated and tortured. When Karen had seizures, those running the program let her fall to the floor, then yanking on her joints to make her stand up. They locked her wheelchair in a closet, forcing her to walk. They strapped her to a tilt table to “teach” her not to faint.
“It is just so messed up,” says Karen. “How is it that a hospital can claim parental abuse but they can’t be charged with physically hurting me? I was a trapped prisoner with no rights, a ghost. Those in power had a false idea of who I was and nothing I said would change their opinion. Why weren’t my feelings ever recognized?”
Her nightmare experience led to a breakdown in her relationship with her parents that took years to repair. Plus, Karen struggled to fit in at school. She required an adult aide; other kids didn’t want to hang out with an adult. Kids were cruel to her too, whispering about her, ignoring her or calling her a “crippled weirdo.”
A change of schools in the seventh grade made all the difference. Now, Karen has a close group of friends that care about her. Her best friend, Emma, helps her during the day by carrying her books or walking her to classes. The school has also been extremely accommodating with her ongoing needs, like allowing her to take finals at home. This extra support means Karen now she has the ability to be a kid while taking care of her health.
Advocacy leads to better care
Her parents’ fierce advocacy finally led Karen to specialists who listen and care. In addition to CRPS, she has been diagnosed with a multitude of rare diseases including postural orthostatic tachycardia (POTS), EDS, dysautonomia, syncope and cervical instability.
She has tried countless medications to treat her conditions; she’s allergic to many, but some do help alleviate her symptoms. Meditation has increased her body awareness, so much so that she relies on it daily to help control muscle spasms and pain.
Finding inspiration in spite of pain
Karen has struggled to find balance between surgical structural corrections and symptom-masking medications. She has undergone a number of surgical procedures, some of which helped reduce the pain; procedures to repair her bent brain stem have been most helpful. Today her pain is still high but she has found ways to manage it, including medications like midodrine and beta blockers.
Karen feels lucky to have a supportive community. Her parents, brother, grandparents and friends share their strength with her during the worst moments of pain, suffering and surgery recoveries.
Karen credits one person for truly saving her life. Karen met nine-year old Eden two years ago when they both were in the hospital for brain stem compression. Karen was finding it difficult to keep going, but Eden held her hand, assuring her everything would be OK, and stayed by her side before and after surgery. Karen held on because Eden held on; she smiled because Eden smiled; she regained hope because Eden was full of hope.
“She was just a girl but I saw myself in her. She is my best friend. She is the reason I am here today, fighting and advocating for others,” says Karen.
“My motto is: don’t let even the biggest things slow you down in life. I loved to ice skate but was forced to stop because of my illnesses. This was devastating to me. Recently, I started taking lessons again. I realized I am already sick so I might as well be in pain and happy rather than in pain and miserable.”
Advocacy in action
Using the pen name Molly Jones, Karen created a blog called Sweet Lemon Pies, highlighting the beauty, strength and courage of children dealing with chronic illness. She plans to write a book about her experiences.
In May, she testified at the state capitol building in Massachusetts. Her testimony was candid, powerful and raw—just like her. “Testifying was the coolest thing I have ever done! Not feeling as if I had a voice for so long, I now see the importance of speaking and utilizing my voice wisely when given the chance,” she says.
The Coalition Against Pediatric Pain (TCAPP) has also played a significant role in Karen’s life. Her mom co-founded the organization to make sure the horrific experiences Karen endured would not happen to another child. TCAPP’s mission is to connect families dealing with pediatric pain, educate families and physicians about overlapping medical pain conditions, and push for advancement and research of disorders.
While finding the right doctor has helped, Karen still feels unheard sometimes. She still notices her complaints are brushed aside until the issue becomes a crisis. She wishes this wasn’t the case; she wishes more doctors understood their actions have direct consequences. “Being told my pain was ‘not real’ was the worst feeling ever. Doctors are supposed to help, not make you worse,” says Karen. Her message to the medical community is not to let ego or a preconceived idea get in the way of how you care for your patients. Kids should not be made to suffer because no one believes them.
To her peers, Karen says there is no secret to getting through these situations. You have to be strong to survive, but that is a choice: You must choose to stay strong. Choose to live, choose to be happy, and know you are not fighting alone.
Karen is a brutally honest, articulate, truth-seeking young woman. While she doesn’t like to think about the future—what is going to happen will happen, so no need to worry, she says—she dreams of being a writer and traveling the world. Karen is fearless: an adventurer who dares to think differently and live authentically. Her tenacious spunk and optimism push her through the trials of pain. Karen is one of a kind… and she’s on a mission to create pediatric pain awareness.
“A lot of bad things have happened to me, and continue to happen. Yet I don’t want anyone to feel sorry for me. I feel extremely lucky; pain has made me grow into the person I am today. Every day I choose to be happy. I choose to acknowledge the bad and turn it into something positive and good,” Karen explains.
“Now, I just want to make a difference. I want to use my experiences to make it safer for other kids with rare diseases to find treatments and help. More than anything, I just want people to be kind to one another—to stop judging and start helping.”
The Coalition Against Pediatric Pain (TCAPP) – www.tcapp.org
Sweet Lemon Pies blog – www.sweetlemonpies.com