It’s no secret among the chronic and invisible illness community that we often have people in our lives that don’t believe us. From doctors, to friends, to even family members that have known you all your life. A common ideal among us is that sometimes the pain of not being believed can be more unbearable than the conditions we live with. Many of us go years without a diagnosis or don’t have a strong support system to keep us going day-to-day.
We often face painful accusations of faking our physical symptoms or attempting to seek attention. These accusations are ever more confusing and hurtful when they come from people who you would think truly know you and would never think you would lie about such serious and life-changing symptoms or conditions. It is baffling to us to contemplate the idea of faking being miserable, missing out on special occasions, or continuing a façade when facing such negative comments for any reason at all. Yet, this is the assumption we continue to be placed under.
In my journey towards having my conditions diagnosed, and even still as we explore other unexplained symptoms, I have encountered the phrase “when you hear hoofbeats, think horses, not zebras.” This phrase has been adopted by those with Ehlers-Danlos syndrome, as it is relatively rare and glossed over by physicians who only look at the obvious and basic answers. I believe that this phrase can apply to pretty much any chronic, invisible illness. Many of them are difficult to diagnose when they mimic more benign conditions or, as in my case, symptoms are looked at one-by-one over the course of many years and don’t get put together to form a big picture.
For instance, I visited the doctor many times for frequent bruising, painful dislocated joints, tachycardia when standing, gastrointestinal issues, and so on and so forth for years. I received a barrage of tests as I complained about these things, but only basic testing. When these tests didn’t yield any significant results, the doctors simply scratched their heads and either sent me to another doctor or gave up entirely. Over time, these symptoms continued but never got put together, significantly delaying any hope for a diagnosis. In this sense, it contributes to seeming like a lie because you spend years with symptoms that appear random and without logical cause.
Over time, for many people, the combination of dealing with misery for so long and the disbelief of those around them wears down the mental state. Depression and anxiety overtake many of us, which further discredits us. After seeking help for mental health issues, I suddenly became a pariah among those around me. Most people avoided me in general and especially wanted to avoid any conversation about my health. They believed my struggles with mental health meant that my depression was either manifesting as physical symptoms, or I could have just gotten better if I would simply lighten up. Although depression can cause a variety of physical symptoms, I knew for sure that the pain I was feeling was real.
At one point, shortly after the rupture of a particularly large ovarian cyst in which fluid remained in my abdomen for an extended period of time, I sought help for the continuing pain I was experiencing for it. The physician originally ignored the cyst rupture and opted for a diagnostic exploratory surgery to search for the pain. Upon finding nothing else wrong, while I was still sedated from the surgery, he told my husband that the pain must be psychological in nature. He also insisted that my husband not express this to me so as not to upset my delicate mental health.
Unfortunately, this idea spread to other family members and tainted their views of my struggles with my health. My husband let it slip to me, and upon confronting my doctor he agreed that the pain could have indeed been from the cyst. The damage was already done, though, and my family seemed not to believe a word I said about my physical state from then on. I, myself, even believed it temporarily. I spiraled into a dark place under the belief that I had somehow lost my mind and imagined the severe pain that wasn’t there. There is something deeply painful about being forced to question your own sanity and the things you have felt.
Another aspect of disbelief is that many of us are accused of “symptom searching.” When we come across a possible direction to take as far as conditions that we might have, it’s not hard to look at a list and say, “I have this problem! And this one! I may have this condition!” Sometimes, they may even be symptoms that they’ve never really mentioned to anyone else. Although this is often done because we are simply trying to put a name to our problems so that we may learn how to deal with it, it comes across to other people as finding problems that were never truly there. Or, as I’ve been accused of, having a “confirmation bias.” Most people don’t understand that much of our journey to diagnosis is a giant guessing game, or that we generally have to take our health into our own hands when we get forsaken by medical professionals. In many ways, I wouldn’t have gotten any help if I had not taken the initiative to do my own research and advocate for myself. Sure, this often leads to avenues that are incorrect. Nevertheless, in the end, I have eliminated things and gotten closer and closer to the correct diagnosis.
Many chronic illnesses can be degenerative, dangerous, or have a serious impact on quality of life. Diagnosis can be the difference between just surviving and truly living. When those around you deny your struggles, it can both impede your entire life and damage your mindset entirely. If you’ve got symptoms you need a diagnosis for, never give up and never stop being your own biggest advocate. If you’re already diagnosed but still facing struggles with those around you, still advocate for yourself. We can’t afford to doubt ourselves in a world that seeks to silence us. We need supportive people in our lives and must believe in ourselves to power through.
About the Creator
I'm a mom of three that has a burning passion for writing and activism. I'm currently a copywriter for Habit Nest, but I'm on Vocal to branch out further and put more of my own personal work out there. I hope you enjoy them!