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Disability Advocacy

Disability Advocacy

While Angela Hartlin is best known for her mental health advocacy with her memoir FOREVER MARKED: A Dermatillomania Diary and recovery from excoriation disorder, she is also vocal about several other health issues she has faced since 2012, resulting in chronic pain, physical disability, and abuses in the healthcare system.

Piriformis Syndrome

Months after a fall in late 2012, Angela began experiencing excruciating pain throughout her lower back, hips, and buttocks. After seeing several physiotherapists, chiropractors, massage therapists, and an osteopath while waiting over three years for a diagnosis in Nova Scotia, Canada, the pain was eventually isolated to her left gluteal region.

Disability Advocacy
Speaking at a TLC Foundation for BFRB‘s conference. NJ, USA 2013

During her first year of disability, Angela’s family doctor (GP) declined to make referrals to specialists or further her care, so she changed GP’s and had to wait another two years to see a pain specialist and two years for an orthopedic surgeon, with the former diagnosing her with piriformis syndrome, and the latter offering nerve blocks in 2015 until she was dropped as a patient in 2017 due to mental health discrimination.

Unable to work due to chronic pain and mobility issues, Hartlin‘s skin picking advocacy waned as her health deteriorated. After an invasive trauma by a doctor in 2016, her mental health plummeted and she began having daily panic attacks- some of which she still struggles with today.

She experienced difficulties lifting her left leg to walk, could hardly turn her body left, was unable to apply pressure to her buttock when sitting, and incapable of lying on her left side. The toll chronic pain and trauma had on Angela threw her into a depression, causing her to revisit dark places and exacerbated many anxieties, also causing her surprise skin picking recovery (as detailed on The HuffPost) to waver.

After trying several methods of therapies from various types of practitioners, she knew her 24/7 agony was more serious than what most practitioners believed. With an extensive mental health history from a young female and no significant pathologies showing up in scans, it was easier to conclude that she was “too sensitive” (as she describes on The Mighty) than it was for the hubris of many professionals to process that they may be unaware of a serious and debilitating condition they didn’t have the resources, or knowledge, to diagnose.

Disability Advocacy
Disability Advocacy
Disability Advocacy
Disability Advocacy
Disability Advocacy

Labral Tear and FAI Discovery

The compensation from dragging her leg to walk, combined with years of muscle atrophy lead to a ripping in her right hip in early 2018 that was later diagnosed as a labral tear, along with Femoroacetabular Impingement (FAI), which explained pains she experienced since childhood that were previously dismissed. Her situation became an emergency; in no longer having a side of her body to sleep on, losing most of her mobility, and being abandoned by the Nova Scotia healthcare system, she became desperate. In no longer having an orthopedic surgeon, her only option was to return to her GP for another referral and wait on another two year waiting list, without being seen until Feb. of 2020 (when her daughter was later born).

Disability Advocacy
Disability Advocacy
Disability Advocacy

After joining an online forum, Angela read about peripheral nerve surgeon Dr. Tim Tollestrup, a pioneer in piriformis removal surgery located in Nevada, USA. In learning that no surgeon in Canada could help her and knowing she would have to wait until 2020 for her pending surgeon to address her hip, she needed to take immediate action through medical tourism to regain her mobility and save her life.

Piriformis Removal Surgery

Since no department in Nova Scotia would cover expenses for a surgery that hadn’t undergone Phase Two of clinical trials, Angela launched a GoFundMe page. She appeared on Global News Halifax with her plea and details of a bottle drive that was set up to help offset the cost of surgery.

On August 6th, 2018, Angela met with Dr. Tollestrup in his office for a consult. During his physical examination, he discovered that Angela was also in the beginning stages of tarsal tunnel syndrome from the sciatic nerve being compressed; she was lucky to have never had the pain travel down her leg like many people with piriformis syndrome do, but it would eventually happen without surgery.

GRAPHIC WARNING: Part of Angela’s surgery

The next day, Angela had her piriformis muscle removed. She didn’t know at the time that the origin of her pain came from the fall, but Dr. Tollestrup’s conclusions were that it must have been caused by that degree of force, and likely on an angle. Nearly six years before, Angela fell on a set of stairs while working and grabbed a handrail with her right hand while being weighed down on the left holding a basket as she landed; it’s the only explanation for the amount of damage Dr. Tollestrup uncovered.

Disability Advocacy
Disability Advocacy

Had Angela’s FAI been diagnosed and treated when she first tried to address about her hip pain at 19, her body may have been in better condition to withstand the fall, or her right hip may not have torn. While she was given x-rays at the time, the requisition did not specify to look for her condition, and she was told by her former GP that some people just experience pains for no known reasons.

Recovery from Surgery

After resting in the hotel after surgery, Angela awoke unmedicated but in less pain than in the months leading up to surgery! With the procedure taking just under an hour and a half, it felt like a miracle! However, rehabilitation was difficult due to the unaddressed pain in her right hip.

In sending her piriformis surgery video to the incoming orthopedic surgeon’s office along with a detailed history sharing how many years of pain she endured, her appointment was moved up a year to February of 2019. During that time, she returned to physiotherapy to rebuild strength on her left side but was held back by her right hip. After becoming pregnant and extremely sick, (as shared on Truly Mama), she stopped pool therapy and was unable to resume after giving birth due to the pandemic.

In November of 2021, Angela received an arthroscopy to fix the labral tear and FAI in her right hip. Recovery was not as successful in eliminating pain as it was for piriformis syndrome because of scar tissue on the ball joint and cartilage delamination (aka, early stage of arthritis). She continues to maintain her strength and mobility through physiotherapy exercises with the hope of restoring her body as much as possible.

Outcome

While recovery from the piriformis removal was negatively impacted by her hip conditions, she considers the surgery to be a major success for her situation because no form of conventional therapy could remove the scar tissue build-up on her sciatic nerve. Her left-sided pain and mobility issues subsided within three months, and she now only deals with mild discomfort/ stiffness when lying on it. Surgery not only gave her back her life, but allowed her a small window of time to become a mother.

Angela focuses on her advocacy for skin picking awareness and other Body-Focused Repetitive Behaviors (BFRBs) due to the stigma and shame associated with these compulsive disorders, but also shares her disability journey to bring attention to egregiously long wait times in Nova Scotia, discrimination and abuses within the healthcare system, and the importance of self-advocacy while assisting others in receiving the help they need to move forward with their lives.

Continued Advocacy

Not only has Angela endured years of trauma from discrimination, neglect, long wait times, and abuse from professionals, but it was even more appalling to see her mother experience mistreatment in the healthcare system because of her age, health concerns, and living situation.

Disability Advocacy
Disability Advocacy
Disability Advocacy

In 2019, Angela made a desperate facebook post that went viral locally after her mother, Pamela, broke her shoulder in four places and was sent home, untreated for five agonizing days. Angela and her husband were willing to drive her anywhere in Nova Scotia (or New Brunswick) to get surgery, but were told by several hospitals that none could take her.

Horrified that anyone would be forgotten the way her mother was, she sought the public’s assistance in finding immediate help for her diabetic mother, who was vomiting from pain and told to fast each day in case she was called to come back for surgery.

Members from several political parties reached out, which led to NDP leader Claudia Chender advocating on her mother’s behalf while pressing the Liberal government and former Health Minister Randy Delorey for answers.

Pamela received surgery the next day in her city, thanks to the collaborative efforts of two NDP offices. Both Pamela and Angela were contacted by CBC to discuss this crisis. Later, Angela penned an op-ed in The Chronicle Herald about her mother’s ordeal to expose gaping holes in the system and prevent anyone else from experiencing what she, her mother, and a countless number of Nova Scotians have already had to.

Angela’s mother was diagnosed with osteoporosis and needed an additional shoulder surgery months later to repair the damage incurred from the fall. Pamela continues to struggle with her shoulder but is grateful that she exceeded the expectations of her original prognosis, regaining enough mobility and strength to experience the luxury of picking up and holding her precious granddaughter.

Disability Advocacy
Angela, Pamela, and Jason
(Angela’s husband) before surgery, 2019
Disability Advocacy

Whether you’re fighting for yourself or loved ones, if you’re told nothing can be done, don’t give up. Seek out information in online forums and research alternatives if you’ve exhausted local resources. Trust your instincts about your body and don’t allow practitioners to gaslight you into minimizing or dismissing persistent symptoms that affect your daily life.

If all else fails, go public. Contact local politicians and the media. Post on social media. Raise hell. Fight unapologetically for the one life you’re given.
You are worth the battle.


Follow Angela on Instagram for updates about her recovery from piriformis syndrome and FAI surgeries, along with excoriation disorder awareness and management. She can also be found on Facebook, Twitter, and contacted via e-mail.
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