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<\/figure>\r\n\r\n\r\n\r\nDrawing timelines<\/h2>\r\n\r\n\r\n\r\n
We kicked the project off by inviting everyone to draw a timeline charting their life with hip dysplasia. We hoped that the timeline would provide everyone taking part with a frame to talk to when meeting the rest of the group for the first time and being asked to share their experiences. The timelines did just that – eliciting detailed and often emotional narratives about what living with hip dysplasia has been like for them.<\/p>\r\n\r\n\r\n\r\n
For some of the group their timelines didn\u2019t begin until they were in their 30s or even early 40s due to their hip dysplasia going unnoticed \u2013 or undiagnosed. For others, their timeline started at birth or early childhood.<\/p>\r\n\r\n\r\n\r\n
A wide range of personal journeys unfolded across the first few sessions as the group met one another and explained their experiences of diagnosis, surgeries, \u2018pre-hab\u2019 and rehabilitation. However, despite different starting points, ages, lifestyles etc., their experiences were startlingly similar \u2013 and the parity of what they did share, obvious to all.<\/p>\r\n\r\n\r\n\r\n
Diagnosis and treatment challenges<\/h2>\r\n\r\n\r\n\r\n
Many of the group had gone years without a diagnosis, their pain without explanation and many\u00a0had been\u00a0left feeling not believed by\u00a0the\u00a0medical professionals they interacted with. Once diagnosis did come, while the validation of their symptoms provided relief, diagnosis\u00a0often\u00a0meant multiple surgeries. These ranged from arthroscopies to pelvic osteotomies \u2013 with the pelvic acetabular osteotomy the most common intervention experienced by the group. Designed to preserve the dysplastic hip for as long as possible and pushing the need for a total hip replacement as far into the future as possible, pelvic osteotomies are extensive surgeries with lengthy recovery periods for those receiving them. While they promise the best chance at preservation, they do not promise a pain free or return to presurgical physical abilities.<\/p>\r\n\r\n\r\n\r\n However, it was not the post-surgical pain, the months of rehabilitation that follow these surgeries that the group focussed on, but other aspects of their surgical experience which seem to \u2018cut the deepest\u2019. For those without family members able or willing to help care for them in the early stages following surgery, care at home was needed. The indignity of needing support to wash, dress and even toilet as a young person is the core memory left for some. For others, visceral aspects of surgery not explained ahead of time were remembered as traumatic by these young adults \u2013 including, catheterisation and bowel management; and unasked or unanswered questions about how menstruation might affect surgery added to their anxiety pre-surgery. Coupled with health care professionals not always being familiar with their particular surgery and expecting them to rehabilitate like those with a total hip replacement, many of the group were left to advocate for themselves and educate those they met about the reality of their surgery and their needs.<\/p>\r\n\r\n\r\n\r\n The group’s timelines were also full of rollercoaster type experiences of recovery post-surgery, noting ups and downs of progress and setbacks, and detailing the repetitive nature of multiple surgery-rehab cycles. Timelines also touched on how hip dysplasia had impacted upon family and friends and on their relationships. In project sessions, while talking through their experiences, group members often reflected on what their parents went through for those whose hip dysplasia had been diagnosed as a child. They wondered what it must have been like for them to have a child going through multiple interventions and surgeries. The impact on and support needed by partners also came out in discussions.<\/p>\r\n\r\n\r\n\r\n Some of the group reflected how important support from their family had been to them but reflected how many of their friends did not realise the extensiveness of the surgeries they were undergoing and were not as supportive as they had hoped (and needed) them to be. Some reflected that their partners did not know or understand the journey ahead for them and needed support themselves in dealing with the post-surgical rehabilitation process. Others recognised that the chronic nature of their condition and how the pain they experienced effected their mood had strained relationships and contributed to the breakdown of relationships.<\/p>\r\n\r\n\r\n\r\n They were, however, also full of triumph \u2013 stories of succeeding and achieving \u2013 reaching fitness milestones or loosening the grip pain had on their lives and well-being. They also told of adaption, of trying new things, setting new goals and included an amazing commitment to being physically active.<\/p>\r\n\r\n\r\n\r\n In the next blog, we will explore what being active means to the group, the challenges of getting active again post-surgery, what exercise and activities works for them and why.<\/p>\r\n\r\n\r\n\r\n![\"\"](\"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2021\/05\/Annick-1024x768.jpeg\")
<\/figure>\r\n\r\n\r\n\r\nThe rehabilitation journey<\/h2>\r\n\r\n\r\n\r\n
Relationships and post-surgical rehabilitation process<\/h2>\r\n\r\n\r\n\r\n
Overcoming challenges<\/h2>\r\n\r\n\r\n\r\n