Q2. What are some of the common pathways to a diagnosis of chronic pain?
Diagnosing chronic pain is not easy. Depending on the condition, it can take several years to receive a correct diagnosis. Usually all pathways begin with a primary care physician/GP who can then make a referral to an appropriate specialist, such as a rheumatologist. From there, diagnostic assessments & imaging may (or may not) occur to confirm a suspected diagnosis. This sounds easy enough, so why do many people with chronic pain find that they must wait years for a proper diagnosis? First, some chronic pain conditions may have various symptoms that do not ‘add up’ until someone is finally able to connect the dots.
My diagnosis journey went on for 30 years due to the difficulty of connecting the dots. When I was a child, I experienced a lot of joint & back pain and was told that it was simply growing pains. I am quite tall with long limbs, so it was easy to accept that answer and move on. I would also experience headaches and sometimes nose bleeds during summer but was told that this was just because of the changes in air pressure. I experienced oral health challenges and was told to simply brush my teeth more than the usual recommended guidelines. All these symptoms, along with many others, were treated independently rather than holistically because they did not fit a profile of something commonly diagnosed. It was not until I reached adulthood that the dots were finally connected, and I received a proper diagnosis of Ehlers-danlos Syndrome.
Stigma also plays a huge role in the length of time it can take to diagnose a pain condition properly. Some medical professionals are ill-informed and therefore ill-equipped to supporting those living with pain conditions. Individuals who live with conditions such as endometriosis, for example, often report facing huge medical stigma, bias and trauma because the extreme pain they experience is not validated or respected. This stigma passes the burden onto patients to either ‘prove’ their pain or invalidate their own experiences through self-blame and shame. There is so much more that needs to be done to change the ways chronic pain is diagnosed. Having a strong circle of both formal and informal supports can make this process less daunting because it serves as a reminder that your experience is real and is believed by others. Tracking your symptoms, whether through an app or diary, can also help here.
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