One in four adults in the United States is living with some type of disability; that’s 61 million people living with some kind of medical condition that impacts their daily living, and that number is on the rise. In the United States, while 92 percent of people have healthcare only 66 percent of disabled people have a routine provider covered by their insurance.

Hypochondriacs, people who are obsessed with the idea of having a serious but undiagnosed medical condition to the point of causing personal stress and anxiety, make up between 2-5% of the total population. Some suggest that number is even lower–as many “hypochondriacs” are later diagnosed with a genuine medical issue. “Hypochondriac” has become the new “hysteria,” in dismissing oftentimes disabled women when they bring up legitimate concerns.

The hypochondriac stereotype creates frustrating and life-threatening experiences for disabled people. Disabled people tend to have extensive knowledge about their medical conditions, such as what treatments they need and what tests are required in order to treat their condition. When they have to argue over their diagnoses in order to get proper treatment, as doctors think they are exhibiting hypochondriac tendencies due to this extensive knowledge, this delay holds the potential for life-altering consequences and even death.

Ella Nutt, a freshman at Elon University, details her experience trying to get treatment when she was out of state and therefore away from her medical team. Ella was diagnosed with spina bifida and hydrocephalus at birth; she has a medically inserted shunt in her brain to drain excess fluid in order to operate on a day-to-day basis. Without her shunt, excess fluid will build up in her ventricles, putting pressure on her brain which then leads to impaired vision, cognitive difficulties, and incontinence.

When vacationing in Florida last summer, Nutt’s shunt malfunctioned–something she could feel immediately. This was not the first time she had experienced a malfunction; the dizziness, fatigue, and overall ‘wrongness’ were all too familiar.

“Once I really sat down and really thought about it, I knew. Deep down, I knew, that’s probably what it is,” Nutt says.

Her parents were optimistic that it wasn’t a shunt malfunction, hoping it was something they could delay until they returned home, until Nutt became gravely ill. A beach girl at heart, Nutt explained her mom’s biggest tip-off was when she declined a day at the beach, claiming she felt too tired to go.

Initially, even Nutt didn’t want to acknowledge the seriousness of the situation, hoping to avoid a hospital trip on vacation.

“I wanted to believe my mom that it really was just dehydration. Like anybody who’s been in that situation, I didn’t really want to go to the hospital. Nobody does,” Nutt says. “Nobody really wants to be there.”

Once in a local ER, doctors were unable to treat Nutt. Despite the fact that she was having severe medical complications by this point; Nutt struggles to recall exactly what happened once she arrived at the hospital, as she was suffering from a severe headache and dizziness. They performed CT scans and a variety of other tests, but Nutt had to wait several hours for her records to be transferred from her home state in order to receive the life-saving surgery to replace her shunt. She recalls communicating with the doctors over and over, telling them exactly what had to be done–but they refused to proceed until they had “proper verification” from her normal medical providers.

“That was just a crazy time,” Nutt says. “We weren’t sure at first… my family and I knew right away because I’d been through it before, but the hospital couldn’t do anything right away even though I needed to be seen right away. It was just crazy.”

Luckily, Nutt made a full recovery, but still recalls that event as one of the most stressful and scariest of her life.

Experiences like Nutt’s are not exclusive to this event. Many medically complex patients with a well documented and visible illnesses and disabilities meet the same resistance from doctors not familiar with their case. Which can make a stressful situation worse. Those with invisible disabilities fight an uphill battle to even get diagnosed, but a diagnosis sometimes still isn’t enough.

Victoria C., a college freshman, has experienced chronic pain, fatigue, and subluxations for the last several years–but none of these symptoms have been enough to get her the referral to the rheumatologist she has been desperately seeking to meet with to figure out her symptoms.

For the last several years, Victoria has been seeing countless doctors and specialists, trying to get a diagnosis to explain her myriad of symptoms. Her struggles started with pediatricians claiming she’s too young to experience these symptoms. Specialists have also been unwilling to see her without a referral, leaving Victoria to deal with constant, chronic pain that leaves her feeling frustrated and helpless.

“I do have a diagnosis for a migraine disorder. I got that pretty recently, within the last year. It was a real struggle to get [the diagnosis],” she says. However, Victoria doesn’t believe her migraines are causing all of her symptoms. “I think I have EDS, possibly POTS… that’s what I’m fighting with my doctors to get tested for.”

She’s tried all the ‘pseudo treatments’: “Both the migraines and the numbness… they’ve put me on gluten free and dairy free diets. They’ve done bloodwork and I’ve been vitamin D deficient and so they say, ‘make sure you’re taking this, this, and this, and it should all be fine.’ It might be fine for a couple days, and then something happens again, and it’s exactly like it was.”

Victoria’s lack of diagnoses has led to significant mental trauma. Mortified after a disability related experience in high school, she recalls, “Being wheeled out [in a wheelchair] of Forge… it was honestly humiliating. I probably could have walked out sooner if I had been able to go sooner [to the nurse]. It was really rough. I got home and I just cried for a really long time because it was like nobody understands that I’m in so much pain.”

Victoria was experiencing significant pain in her legs–specifically her joints–which turned into numbness and an inability to walk out of her high school that day. Emergency room doctors found no cause for her pain and numbness, and sent her home with ice packs and pain medication.

Without the ability to receive proper treatment, many undiagnosed people face the same mental strain Victoria described. Shame, mortification, and anxiety compound the physical symptoms and lead to worsened physical and mental symptoms systemically.

Her experiences mirror that of so many other disabled people, both with visible and invisible disabilities. Advocacy in the form of speaking up, researching, and bringing a loved one as ‘backup’ are often the only way disabled people are able to get the treatment they need.

Recently, I fell down the stairs; instantly, I knew something was broken in my hand. The doctor I saw the day after my injury told me I had bruised my ego more than my hand. Two weeks later, his superior told me to just, “Stop being in pain, and stop wearing that brace.” To those doctors, my EDS and osteopenia were irrelevant–a blatant disregard many EDS patients experience. By the time I was finally able to see my normal hand surgeon’s PA a month after the initial injury, I was in tears explaining to her what I thought was wrong, expecting much of the same.

Instead, she was appalled at the ‘treatment’ I had received. The MRI she ordered showed a tear in my tissues and ligaments–something I will need surgery for.

These experiences are horrendous, and unfortunately, more typical than not.

Advocating for yourself in a doctor’s office is crucial to changing your medical outcome.
In regards to her migraines, Victoria explained that it was until recently, after complaining so much about her migraines, that she was finally referred to a neurologist. Once there, he was able to diagnose her with a migraine disorder and order the testing she needed.

“If you press hard enough, eventually somebody–whether it be your doctor or your parents–they will believe you,” Nutt says.

Speak up if you think the treatment or diagnosis you received from medical professionals isn’t correct. Have the doctor explain your symptoms fully, the rationale behind them, or ask the questions that you have. If the doctor refuses to speak with you, or is dismissive of your concerns–that is a red flag you should pay attention to. When a doctor won’t have a proper conversation with you, and instead treats you as a checklist item, you are likely not receiving the care you need.

Good bedside manner extends beyond the initial visit; a doctor that follows up, researches your conditions to familiarize themselves, and is focused on making sure you’re living your best life rather than being “cured.” The distinction matters.

“The best doctors are the ones who are willing to sit down and have a discussion with you about not just what you think is wrong, but how it affects your day to day life. I think that’s really important,” says Victoria.

Research beforehand; know what you’re walking into. WebMD can hold all the stereotypes in the world, but knowing a baseline idea of what you might be experiencing is crucial. No one knows your body better than you do.

Trust your gut; if something is wrong, something is wrong. You know the way you should be living, and this isn’t it. Victoria pushed and pushed until she finally got an MRI for her injured knee, which finally revealed a torn meniscus–something she needed surgery for. It took two years after a fall in soccer, countless ER doctors, specialists, and physical therapists, before one physical therapist examined her knee long enough to realize it wasn’t just a muscle strain. Two surgeries later, and Victoria is finally healing from the initial injury.

“It was just doctor after doctor, refusing to give me an MRI,” she says, “I know something is really wrong with me.”

Get a second opinion; especially when you feel that the first several doctors aren’t listening to you. Dismissive doctors can lead to internal doubt over whether your pain and symptoms are as bad as you think they are. Reaching out to a second doctor, or even a third, can eliminate that internal doubt and help you receive the treatment you’ve known you needed since the beginning.

“If you’re ever in doubt, a second opinion is always good. It never hurts, even if you’re pretty certain about something,” says Nutt.

As a disabled person, your health doesn’t always look like most of the patients that come into the doctor’s office. It can be incredibly difficult to turn off the negative voices that tell you you’re overreacting, or exaggerating your pain, or seeking for attention, all of which come from anxiety instilled by bad medical practices and experiences.

Listen to your own voice of reason, and remember that you always have the power to say something.

“At the end of the day, you know yourself the best. Not your parents, not your doctors–you,” says Nutt, “If you feel like something is wrong and you’re not feeling like you would feel on a good day, then it’s probably time to get some help.”