If I had to deal with the fearful situation of my physical health declining with age, I would definitely feel a lot of stress; this is a concept that I already ponder over even though I’m 22 years old. Part of my journey is learning to accept and accommodate for my disability, and in a culture that prioritizes profit and efficiency, it is scary to think about the situations I could end up in. Although I’m already struggling with the cycle of feeling like I’m okay, pushing myself, then experiencing a flare up, I’ve realized that eventually I need to find ways to manage my stress. Fibromyalgia and hEDS/HSD along with the comorbid conditions generally flare up in response to stressors. Overall, if I experience a decline in my health with old age, I hope to have a family and community that will help me along with proper medical care/physical therapy, along with accessible healthcare. I already fear for my future financially due to the medical debt I’m already in.
After referencing the CARA model, the ways that I could use GRR’s/resources to accommodate myself for my condition is to find ways to pursue my hobbies such as floristry and gardening by getting a raised garden bed to limit the amount of bending/kneeling that has to be done, along with getting compression garments and necessary braces to help with the discomfort. Using self awareness and emotional regulation, I could grow to understand my limitations and find a community of people to support me while I’m going through a hard time, pushing me to achieve resilience. Resilience to me looks like continuing to enjoy life even with obstacles.
According to NIH’s National Library of Medicine, researchers have yet to find exactly how hEDS/HSD affects older adults, including its progression; Anderson and Lane state, “Researchers continue to debate whether diagnoses co-existing with hEDS/HSD are a cause or a result of hEDS/HSD, a distinct comorbid condition, or a possible misdiagnosis due to symptom overlap with other conditions. Whether these conditions are comorbidities or hEDS/HSD manifestations, more research is needed to identify symptom clusters and patterns to facilitate hEDS/HSD diagnosis in older adults” (2023). Since the medical field has not been able to fully understand the origins of the condition, the progression in older adults needs more conclusive research.
In other aging news, my grandfather recently got his pacemaker put in due to him experiencing heart rates as low as 30-40 bpm. As I spoke about in my last post, my grandmother has osteoporosis which mostly likely stems from the genetic condition that seems to run in the family (along with the natural aging process). Both of them have Parkinson’s, and I wonder if that will lead to Parkinson’s Disease Dementia. These facts scare me on behalf of their livelihood, and they also make me nervous since I know it is genetic.
Reference: Anderson LK, Lane KR. Clinical trajectory of hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders in older adults. J Am Assoc Nurse Pract. 2023 Oct 1;35(10):605-612. doi: 10.1097/JXX.0000000000000900. PMID: 37261967.
Demi,
I can understand why you are concerned about your general health as you age. I think you already struggle with significant health conditions with Fibromyalgia and hEDS/HSD, so it would be natural that you wonder how aging itself will affect your management of those conditions. It sounds llike that is already a major part of your daily life.
I do think you have one thing going for you. Because of your present condition, you have had to learn about accommodation – how to modify activities, stressors, or other triggers in order to reduce flare ups and not exacerbate your condition. Most of yoru classmates are just talking about how to be able to keep going full out – even as they age. The idea that one would need to accommodate aging is a totally foreign concept to them. Their goal is to be able to do everything they can do right now – even as they grow older.
You, on the other hand, have had to learn how to manage stress differently, moderate behaviors, and make choices that help you stay ahead of your disease. I believe that will serve you well as you age. At least it’s something, right?
I understand why you chose this article. I didn’t feel like it was particularly helpful – did you? Basically they said noboy knows much about how people will age with hEDS/HSD. The most interesting phrase for me was “The included studies suggest that symptom progression is neither linear nor predictable.” Doesn’t give you much guidance, does it?
I came across this group while I was doing a bit of research on this condition. You may already know all about them and they also might not be very helpful, but I thought it was positive that someone was trying to collect this data. https://www.chronicpainpartners.com/the-eds-aging-project/
The tools you are learning now to manage your condition will become the foundational tools you will use to manage your aging. Keep the faith.
Dr P