Getting a diagnosis of ME was a long process. It's always easy to think “what if” or wonder what different circumstances and events would have led to, however, I truly believe that an early diagnosis could have made so much difference. I even saw how close I was to it.
I’d been given a post-viral fatigue syndrome diagnosis about 2 months after having shingles and I paced without knowing what pacing was. But when it continued longer and I seemed to improve before getting worse (when I stopped pacing because I thought it was better), we didn’t understand that it wasn't something new; I was experiencing different symptoms of the same thing.
The doctor I saw at that point, who conveniently didn't want to put a label on what I was experiencing because she felt a diagnosis was harmful, encouraged and pushed the absolute opposite of pacing. I followed what she said and I got worse.
Without a diagnosis, which I completely believe the previous doctor knew and withheld, I was later given a misdiagnosis instead of my symptoms being recognised as Very Severe ME. I was given harmful advice and treatment yet again, this will be explored more in the next chapter.
My point is that diagnosis is needed. It’s needed for patients' clarity, for them to be able to do what’s best for themselves, and for doctors to understand what’s happening. It’s not “label collecting” to have answers about your health.
Early diagnosis protects patients. It enables them to protect their health by pacing, which can help with symptom management but, most importantly, help avoid disease progression. It helps patients avoid harmful treatments and get at least some support (I don’t say the support they need because it’s not available.
Patients shouldn’t have to work this out for themselves like I did with the help of my family, the internet, other patients and eventually consultants.
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