The long road to diagnosing HSD

Posted July 15, 2019

It has taken a long time for my family to be diagnosed with hypermobility spectrum disorder (HSD). We’ve been told different things by different geneticists, and we have symptoms that aren’t attributed to HSD. One of my brothers, my mother, and myself have also all been diagnosed with Hashimoto’s disease.

It proves extremely difficult for most of my family to get through our days with a smile on our face unless we plaster it on there. HSD regularly causes us a lot of discomfort and pain, which leads to depression and a lot of tension. It is very hard to live with and to get help when you’re not taken seriously by countless doctors, and you have an array of other mental health issues standing in your way like I/we do.

We need help with funding to get transport to a local swimming pool, so we can build muscle and keep our joints stronger doing exercise. We need to see specialists and therapists, but it’s a bit of a catch 22 when you’re required to provide forms from highly qualified specialists in order to receive funding. We live in a rural area and we’re trying to apply for part funding to see specialists; we also need help with the expenses involved in gathering all information needed.

Being a man with HSD, who suffers chronic pain, anxiety and depression, it’s very emasculating living in a world where stronger, musclier men are put on a pedestal and it can make you feel mentally weak and worthless.  I’m grateful for seeing there is now the start of a broader understanding of HSD and EDS, especially in a country like Australia where not many doctors are informed enough to diagnose people.

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