The Stigma Surrounding Invisible Illnesses
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I am living with chronic pain. I suffer from endometriosis, polycystic ovary syndrome (PCOS), chronic fatigue, which also causes widespread pain, back pain, shoulder issues, and migraines. I am in pain constantly.
Surgeries did not help, attending physio appointments did not help - keeping active is almost impossible. I am now struggling to keep going; I am struggling with day-to-day tasks and I am left feeling quite low. I have tried all of the recommended, different techniques like the heat packs and ice packs, psychology appointments, walking, swimming, applying muscle creams, wearing pressure socks, wearing back braces, soaking in showers and baths, I even spent money on a ten’s unit - which did nothing.
To add to this, I have now had to give up art and music due to the pain. I play guitar, or at least I did, I no longer can. I have had to give up swimming and all other forms of exercise due to the pain it causes me, but also because of the constant bleeding due to my endometriosis. I have been through a pain clinic, and I feel like they just blamed my mental health as the reason that I am in pain.
My pain is making my mental health worse, yet I feel as if they made me out to be a painkiller seeker. This is despite telling them that “...I actually hate being on them, but they do help me get through my days.” I am in bed now 5 out of 7 days, and that is no quality of life. The Hospital keeps telling me to go back to the pain specialist, but I tried, and was rejected, as I do not meet their updated criteria. I do meet these criteria, not that they care. I feel they just see me as a ‘painkiller’ junkie.
I cannot take anti-inflammatory medication, due to a stomach condition. I do not believe my GP can further help me with pain management, as GPs are now reluctant to prescribe, and many no longer prescribe. It seems opioids are apparently only for those with cancer, but this does not take into consideration those living with chronic pain. I left feeling like a lost cause, and defeated, after my last appointment with the pain specialist. I had a breakdown, and I sat at a train station for over an hour - you can imagine what I wanted to do. Thankfully, I did not.
I feel they are not listening to me when I say that I do not get addicted to the medication, and I can stop the opioids at any time. I do not get withdrawals at all, yet they will not listen, and I believe I am now flagged with all Hospitals. I had to even beg for pain relief after my last surgery, which I feel is neglectful on their behalf, and it is so wrong that it came to that!
I barely sleep because of pain. My eating is all over the place, as the pain takes my appetite away. I cry every day, praying for relief, but it goes nowhere. I see doctors and it goes nowhere. I have suffered for years now, and I feel like I am chasing my tail. I feel like I am not good enough to help, I feel invisible, and I am feeling so alone, wanting to give up. I keep getting told I have no other options. It hurt when one specialist said I was, “...too complicated of a case,” a while back. I am sick of presenting to the Emergency Department for help, as I get treated like a painkiller seeker.
I am scared to go to the Emergency Department now as I get treated horribly. So, I suffer in silence at home, curled up in a ball in tears. Constantly hearing that “...you don’t look sick,” or “...you don’t look like you’re in pain,” does not help, they do not seem to get it! I am at a point where I cannot keep living like this. I am only 29, and I cannot work due to physical and mental health. I suffer from anxiety and complex post-traumatic stress disorder (CPTSD), which also causes pain, another complex disorder, and those other health conditions.
Where do I go from here, what do I do? Those two questions are always on my mind. I have tried to help myself; I have reached out for help only to get shut down. It is like they think they know my body and how I am feeling better than me.
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