Invisible Illness: But You Look Good?

I used to be a golden girl. I was salutatorian of my high school class, ran marathons to raise money for charity, and got a straight 4.0 GPA in college. At 23, I’d just scored my first medical school interview when my entire life turned upside down.

It started with two non-epileptic seizures, but the seizures weren’t the worst part. For six months, I experienced vertigo that was so debilitating I couldn’t walk properly. When I’d try standing, I’d pass out after seven minutes. The fatigue was crippling; I slept at least 12 hours per day and felt like I had never even shut my eyes. My ability to concentrate was completely gone, and so was my ability to exercise.

It took over a year of suffering until I was diagnosed with dysautonomia, a condition that hardly any medical professional had heard of, let alone knew how to handle. Dysautonomia is a disorder in one’s autonomic nervous system. This includes heart rate, blood pressure, digestion, breathing rate, and body temperature, which all become poorly regulated.

I have a particularly rare type of dysautonomia that is called POTS (postural orthostatic tachycardia syndrome). Although it comes with a slew of physical issues, the worst part of this disease for me is the lack of awareness in the medical and research community.

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Western Medicine Is Not A Cure-All

I can’t tell you the number of times people have told me the reason I’m still sick is because I haven’t found a good doctor. Let me emphasize, medicine, whether western or eastern, has not cured every disease/condition on earth. Also, do not look down upon chiropractic, acupuncture, and herbal medicine. The best medicine I have at the moment are licorice root capsules, and without it I am a complete zombie. And guess what? A PhD told me to take this, not an MD.

If we could fully integrate all of the different types of healthcare, including nutrition, we would be able to help far more people. But unfortunately, society, education, or some other force encourages MDs to look down on other types of care. This is really sad and detrimental to the health of patients.

Needless to say, these types of attitudes make it very hard for me to go to the doctor for anything. There are no FDA-approved drugs for dysautonomia and no truly effective Western treatments.

My turning point after 15 months of struggling was when I discovered a POTS treatment center through a Google search. Finding this center is the reason I encourage people to do their own research and be their own health advocate. No doctor or other healthcare provider ever mentioned a treatment center as an option.

This center uses biofeedback therapy to help regulate my autonomic nervous system. An example of biofeedback therapy is using breathing and relaxation techniques to change my heart rate. I have heart rate variability software that monitors my vitals, so I can see if my techniques are working. This center also taught me the value of a daily relaxation practice. Taking the time to consciously relax my muscles every day helps me keep my nervous system in the parasympathetic mode, which is great because many dysautonomia patients seem to spend too much time in the sympathetic mode, causing fatigue.

From Physical to Mental

The toll dysautonomia took on my mental health was totally unexpected. The anxiety crept in first. I began to worry about leaving my apartment for fear of the vertigo symptoms. What if I was required to stand for too long? What if I passed out again? What if I didn’t have enough to drink?

A doctor told me my dizziness and fainting were “just anxiety.” This is absolute garbage, but unfortunately common in the medical community. Would you say I “just” had a stress fracture? Absolutely not. So why do so many people belittle mental health? Compassion, understanding, and true listening to patients are things that desperately need to be brought back into medicine.

Isolation came next. I couldn’t participate in plans that involved too much standing. This applied to more activities than you think. It could be playing billiards at a local bar, going to a concert, or even going to the mall.

Even when I made plans for activities I could handle, exhaustion would often take over, forcing me to cancel on my friends. Eventually, I just stopped making any plans, as I never seemed to have energy for anything.

I also couldn’t relate to my peers, who all seemed to be enjoying life, contemplating passionate careers, and partying. The only thing I was concerned about was what job I could handle without passing out.

With mental health being so taboo, I felt completely alone with all my problems. I felt like if I mentioned anxiety, then there was absolutely no way anyone would take my dysautonomia seriously. Doctors would write me off as an “anxious female.”

Finally, the depression started to creep in. How could it not? The very core of my identity was challenged. I, who’d been running marathons for five years, could no longer exercise without feeling sick. The bike rides, lap swimming, and hikes I relished in – and heck, even hot showers, were all things of the past.

From POTS To Suicide

On March 5th, 2015 a POTS patient committed suicide. She graduated as the valedictorian of her high school class and went to MIT. In her suicide note she told her mom, “Sorry, I couldn’t keep fighting.”

She reminded me of myself. As I read the article, I saw what easily could have been me. When I first developed my condition, if it had not been for my then boyfriend/current husband, I strongly believe I would have killed myself.

The problem is the MIT student saw no hope. When doctors don’t know the name of your condition, let alone how to treat it, how can you have hope that you will get better? How can you have hope when all you see is a life of illness and pain?

Be Kind And Spread The Word

One way everyone can help alleviate the pain of those who suffer from invisible illnesses is to be understanding and try to ease our social anxiety. If someone is exhausted, do not assume they are lazy. They may be fighting a daily battle you cannot see.

When people are aware of a problem, it leads to a demand for a solution. Demand eventually leads to votes in Congress that increase research funding through the National Institutes of Health (NIH) and the National Science Foundation (NSF).

The easiest type of cancer to get research funding for is prostate cancer. Why? Because Congress is full of old men. I am trying to make Congress care about invisible illness to make anything happen. Hopefully my story will help.

I want people to be aware that invisible illness is real, and that the lack of awareness has a huge impact on the patient’s mental and physical health. It also impacts their families, friends, and jobs.

After college, my life went an entirely different direction than anyone could’ve projected. Instead of joining the ranks of medical field, I am currently at their mercy.

If you would like to read Elena’s full story, read her book HERE on Amazon.

Elena Schwartz lives with her husband and new shelter puppy, Lilly. She enjoys watching college football, blogging, and cooking.

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