How Attitudes Toward Me Changed After I Received a Diagnosis

Anyone who has had the experience of living with a chronic undiagnosed illness or a misunderstood illness like fibromyalgia or myalgic encephalomyelitis knows the feeling of being questioned over the validity of their struggle. When no injury shows up on the scans, blood work seems normal and treatments fail, those around start to question if what is happening is actually as real as the person fighting it says it is. It becomes a situation in which family, friends and doctors must rely solely on the reports of the patient, and unfortunately, that is often met with skepticism.

My personal battle with a poorly understood illness has been with new daily persistent headache (NDPH). For four and half years I fought it, sought out every specialist I could think of, had every scan possible and only continued to lose more and more functionality. By year four I was unable to hold a job consistently and had not been able to finish my degree because the symptoms were too much to handle while juggling other responsibilities. Taking care of my body became my full-time job. Unfortunately the world outside of my personal experience could often only see someone who “wasn’t trying hard enough,” was “lazy,” “drug-seeking,” “weak” and “looking for attention.”

While this was certainly not the case with everyone in my life, I want to discuss those who did treat me this way. When I was no longer able to work I became financially dependent on my mom, which is not the most comfortable thing for a 24-year-old woman who would so much rather be living life and reaching goals. I became almost hesitant to even share my good days because of the judgment that said, “if she can do ___, then why can’t she get a job?” Feeling decent became almost as difficult as feeling terrible.

This was the attitude toward my illness right up until one day the tests finally showed what was wrong. In August 2017 I was finally diagnosed with chronic Lyme disease and co-infections, explaining all of the symptoms that by then had cropped up in every single bodily system. Suddenly it was as though I was more worthy of sympathy. Let me be clear. From the day before my diagnosis to the day after, not one thing changed about me. I still had all of the same symptoms, I had the same infections and the same limitations. It was those around me who changed. Like a switch was flipped, it was suddenly understandable that I was not well enough to hold a job. The pain I was in wasn’t brushed off as me being “weak.” The amount of medication needed for treatment was no longer seen as a negative thing. I was the exact same person but many of my relationships drastically changed.

I was fortunate enough to have the tests show a positive result and have scientific proof that what I’m experiencing is real. This isn’t the case for everyone with chronic Lyme because the testing is not very accurate and misses at least 35 percent of new cases, making the disease a clinical diagnosis. I still wonder if my tests had been inconclusive, would I still be shown this understanding? Or would I be questioned like I had so many times before?

This situation is far from unique. Chronic illness fighters everywhere are dealing with the disbelief while they fight through invisible struggles every day. There are people with migraine who are told it’s “just a headache.” Chronic fatigue syndrome/myalgic encephalomyelitis patients are told “we all get tired sometimes.” Fibromyalgia and the invisible pain that comes with it has ended marriages. Countless people are left to feel guilty about things that are not in their control and are made outcasts. Patience for canceled plans dwindles. Friends stop coming around because you aren’t able to participate in life the same way you could before illness took center stage. Co-workers become frustrated with the amount of missed days at work. While you’re fighting to hold on to the life you once had, the support system that has always been there starts to shrink and soon it feels like you’re walking a tightrope rather than a bridge and the ones holding the safety net walk away.

I firmly believe that for every person who is assumed to be “faking” sickness or disability, there is a waiting room full of those who are just looking for relief and support while trying to learn how to live in their new reality. The attitude surrounding invisible illnesses as a whole desperately needs to change. The doctors we must rely on for help shouldn’t be seen as a source of fear and abuse as they currently all too often are. As fellow human beings, we need to do better.

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Photo via darkbird77 on Getty Images