Stigmatized by the Invisible

Life, for many people, is a daily struggle, whether that’s because they don’t have enough food to eat, live in an unsafe neighborhood, are a person of color, or have a disabling condition. Some people’s struggles are outwardly obvious to the greater society, and others are not. The difference in the way a person experiences daily life based on the visibility of their disability can be vastly different, yet both often suffer from stigma and discrimination. As a person that has invisible disabilities, and sometimes must use a cane to help my brain know where I am in the world, I can attest to the fact that the cane changes everything.

Some mornings the simple act of rolling over in bed is so painful that it takes a great deal of effort and determination to change positions; when I finally get out of bed, my body feels like it has aged 40 years overnight and I can hardly move. I’ve lived with Fibromyalgia for 20 years, and for the majority of that time, I had no idea what was causing the debilitating pain and other unexplained symptoms.

In 2017, I started having headaches, and a feeling that the world around me wasn’t entirely steady. The migraines I had in my 20’s and 30’s had returned but in an entirely different way. In early 2018, after two surgeries complicated by severe infections, my body systems started going haywire and malfunctioning. The migraines had intensified, I had severe vertigo, Irritable Bowel Syndrome (IBS), unexplained chest pain, tachycardia, exhaustion, fatigue, ataxia, widespread body pain, brain fog, and much more. Suddenly I found myself in a world I had never imagined, using a cane to get around, and experiencing what’s it’s like to walk through the world with a visible disability.

During this time, the severity of my major depression intensified, as did my anxiety and other mental health challenges. The not knowing why was challenging, and I was going to school full time taking 16 credit hours, working as a peer mentor/teaching college freshman 15-20 hours per week, practically living at Oregon Health & Science University, and attending therapy twice per week just to keep my mental health partially in check. Looking back I have no idea how I managed, other than to say that I am fortunate to have an amazing support system at the university I attend, fantastic doctors, a talented therapist, and friends that lifted me and gave me hope when I couldn’t find any.

It took one year and four months for my primary neurologist to determine that I have Postural Orthostatic Tachycardia Syndrome (POTS), adding to the Fibromyalgia, and severe, treatment-resistant daily migraines with aura’s that my physician had already diagnosed me with (I was told my headache neurologist that I have every type of migraine there is). Some people might be shocked that it took over a year for my doctors to figure it out when it’s honestly a miracle that he did so that quickly. The average time it takes a person with POTS to get a diagnosis is 5-6 years, and during that time people often feel like they are losing their mind, not just because of what’s happening to them, but also because others around them are often conveying that sentiment.

Did getting a POTS diagnosis change anything? I would say that in some ways it did, and in others, it absolutely did not. First off, POTS is not easy to treat, as it affects every major organ system in a person’s body; it mostly affects females (95% in fact) and causes such a wide variety of symptoms that when one seems to be getting better, it’s not unusual for me to have a flare in another. Taking care of yourself when you have POTS is extremely important, and is unequally supported by society, just like mental disorders and every other disability are. Something unique about POTS is that it’s not all that rare, and it’s very unknown by the greater community and physicians alike, which is problematic.

So, what is it like to walk through the world when you have visible and invisible disabilities? Not easy. I have a service dog, Nico, that helps me with my PTSD symptoms and creates space for me in crowded areas. He is a 75lb Labradoodle and the sweetest boy in the world. He is well behaved and was trained for 3 years before I got him. He is a real service dog and acts accordingly. If I am using my cane, which is most of the time because of severe vertigo that accompanies the migraines, then I am not questioned about why I have Nico. If I don’t have my cane, then I am questioned, and often asked if I am training him for someone. I have no idea what my cane has to do with having a service dog, but to the public having a physical disability is associated with the validity of a service dog.

POTS makes it very difficult to be physically active, so walking up flights of stairs is not an option, nor is walking for long distances or standing for long periods. Getting into buildings is often very challenging for me if stairs are the only option, or if the ramp is in an inconvenient location (as they often are). What makes it so much harder though is when people use the ramp to ride their bikes on or groups of people crowd into them rather than taking the stairs adjacent to them.

Furthermore, when a person has a disability parking permit and gets out of the car without an assistance device, like a cane or wheelchair, that does NOT mean that they do not have a disability. There are times when I need my cane, and days when I don’t, but that does not mean that I don’t tire easily and struggle walking long distances. It simply means that I don’t have a migraine yet, so I’m taking advantage of the opportunity to walk through the world without the cane; sometimes I just want to feel “normal” again, or in other words, as I did before POTS.

Giving a person a dirty look or staring them down because they park in a disability space legally, with their permit, is inexcusable. Remember, it’s impossible to know what’s happening in someone’s life; they may have a heart condition or other invisible disability that requires them to use the permit. I know for me; I’d much rather have my old body back and park my car a 10-minute walk away than to experience the physical impact that comes along with POTS. Practicing the art of not judging others is one way to connect with people who may bring more joy to your life than you ever thought possible. Just let it go, it’s not serving you or anyone else well.

Making my way through the world facing what was previously mentioned isn’t easy, and I wish it were different, however, there is one piece that hurts more than any other. When a person looks at me, they see a disability, someone who is less than or damaged; it is a rare day when someone who I don’t already know treats me like the capable, intelligent, strong, and authentic individual I am. I live with a disability, and my disabling conditions do not define me; I am not POTS, I am not Fibro, I am not Depression, nor PTSD, nor anxiety, nor a migraine. I am a human being that has been inflicted by syndromes and disorders, mostly attributed to an extensive trauma history.

All the adversity I have traversed makes me a complex human being, an empath, and someone who is choosing to dedicate her life to supporting others on their life path, through the struggle, and the turmoil. It’s messy for sure, but a beautiful kind of a mess. If life were all about rainbows and lollipops, how would we know we were experiencing a moment of unprecedented joy? As humans, we find the rain so easily, but when we can find the rainbow in the rain and celebrate it, that is when we know we are truly LIVING.

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