I think I’d better start with explaining what I mean by Quality of Life (QoL). I was surprised to read in this excellent article that not all researchers and medical practitioners agree on what is meant by QoL. I found this definition for medical-related QoL in Wikipedia:
Researchers at the University of Toronto’s Quality of Life Research Unit define quality of life as “The degree to which a person enjoys the important possibilities of his or her life” (UofT)
Again, it does sound sort of nebulous. But I guess in everyday terms, I’d define it on how much someone is enjoying their life. How much is their health issue effecting their mood? How much is it hindering what they’d like to do?
When talking about EDS and Quality of Life, there have been several studies conducted on it. This one concludes with:
Hypermobile EDS patients are characterized by fatigue, musculoskeletal pain, anxiety and depression. All of these symptoms are major determinant of disability, which significantly influences the quality of life. Treatment of pain and fatigue should be a prominent aspect of clinical management of EDS in association with rehabilitation therapies.
This Swedish study found:
In comparison with a Swedish population group, a lower health-related quality of life was found in the EDS group. Also, higher levels of anxiety and depression were detected in individuals with EDS. The importance to explore the factors behind these results and what initiatives can be taken to alleviate the situation for this group is emphasized.
And this study of EDS and UCTD (undiagnosed Connective Tissue Dusorder) concluded:
In conclusion, the findings in the present study suggest that pain is common and may impact the QOL of individuals with EDS and UCTD. The public health impact of this study is to increase awareness of EDS and UCTD and the difficulties in treating and managing these conditions. Future studies are warranted to determine which pain management techniques are most effective in improving QOL in EDS and UCTD.
So, basically, the enormous amount of pain, anxiety, depression and fatigue lowers the Quality of Life of those with EDS. To be honest, I would have thought that was easy enough to figure out without needing multiple studies! But, I suppose they are useful proof to provide to doctors who don’t believe that Hypermobility EDS can cause pain and fatigue, and anxiety and depression that can develop as a result.
And to increase our Quality of Life? Well, we’re back to those old chestnuts of trying to get adequate pain relief and decrease our fatigue. Because it’s hard to enjoy your life when you’re tired and in pain!
[image of a white background with the words ‘Q is for Quality of Life’ in black.]