The Long Road to Diagnosis, and the Journey On
A beautifully candid article on Al-Jazeera’s site explores one writer’s experience of her lupus diagnosis, and the years of chronic health issues that preceded it.
Marisa Zeppieri-Caruana, who is living with lupus, writes, “I have often wondered what the finality of a diagnosis feels like for a doctor and how it differs from a patient. Is it similar to a math equation, where symptoms + test results + physical exam = diagnosis, and once solved they immediately move on to the next problem (patient)? Because for patients, moving on seems impossible at that moment. We stand paralysed, feet cemented to the ground with a line of demarcation running between them – one side representing life before and the other, life after the diagnosis.”
The journey that Zeppieri-Caruana describes is one shared by many people living with chronic illness. With all too few exceptions, diagnosis is presented as an arrival, not the beginning of a new path. (Diabetes education stands out as a field that is doing it right, and there are many innovative efforts out there that could be used as a template for people with other lifelong health challenges.)
Diagnosis is just one step in a constant process of assessment and reassessment, of adaptation and modification, of reshaping dreams and lives. Charlton Harris, a blogger at the Sarcoidosis News website, puts it well: “One thing I’ve learned about this condition, like so many of my fellow sarcoidosis warriors, is that I never know how it will affect my lifestyle or my mental and physical progress. In the meantime, I’ll slowly watch myself being challenged by everyday activities that I normally wouldn’t have given a second thought to. Who doesn’t like a good challenge? It makes me feel like I still have something to contribute.”
Harris’s positive attitude is one of his trademarks; his blogs for Sarcoidosis News reflect his optimistic attitude, without downplaying the severity of the disease he is living with. Some of us have a harder time meeting the many day-to-day challenges of living with chronic illness, and as I discussed earlier this year, the real issue of PTSD among people with chronic illness is finally starting to get attention from the medical research community.
Please reach out for the help you need as you go forward on your journey with chronic illness. If finances are a challenge to access, there are some free, sliding scale, and low cost options out there.
