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Faith Littlejohn – a lighthouse for people with dysautonomia

Faith Littlejohn has two autonomic nervous system disorders, postural orthostatic tachycardia syndrome and neurocardiogenic syncope. Both are forms of dysautonomia. As a senior in high school, Faith started spreading awareness about her conditions on social media and soon gained a large following. She continues to spread awareness now that she’s working towards a bachelor’s degree in secondary education.

Dysautonomia is a large group of medical conditions, caused from a dysfunction of the autonomic nervous system. The autonomic nervous system controls involuntary body functions like heart rate, blood pressure, breathing, digestion, sweating and many other things. For people with dysautonomia, their bodies have a hard time regulating these automatic functions. Faith calls people with dysautonomia warriors because it’s a battle. She adds, “I hope everyone with these conditions knows it is more than okay to grieve the life you had before getting sick.” But having dysautonomia doesn’t mean you have to stop living, it just means finding new ways to live life with its symptoms.

Having dysautonomia has affected Faith’s ability to travel and now she must take steps to ensure she stays as symptom free as possible. To prepare for a big trip, she rests for a week beforehand. When packing, she ensures all her necessary medical equipment and symptom aids are packed: blood pressure and heart rate monitors, medications, electrolyte powder, migraine caps, compression socks, etc.

Small outings, like going to classes or the grocery store, might be routine but Faith knows she must remain careful. Her example is, “If I’m having a symptomatic day I have to think about my health and safety above anything else, so sometimes I can’t always go out and do what I would like to.” To this end, she makes sure she always has her medications, lots of water and electrolytes, and high sodium snacks. She dresses in light layers so she can easily adapt to being hot or cold. She wears compression socks to help on more symptomatic days. Faith also knows that resting up is crucial to prepare for a big day or busy week. All these preparations help with her temperature regulation, leg pain, dizziness and threat of fainting.

But travel is still high on her agenda. Faith recently went to Universal Studios with her mother, adding, “It was wonderful!” In part, that’s because she had brought lots of things to help manage her symptoms. Even then, there was some leg pain and a few dizzy spells, but no fainting. She had lots of salty snacks and kept her water bottle full. She says, “We rode all the rides, walked everywhere, ate great food, and enjoyed the magical world of Harry Potter. It’s the most successful trip I’ve had in years!”

When asked about the travel and tourism industry, Faith said that the best thing they can do for people with dysautonomia is to get educated about it. Depending on the form of dysautonomia there are lots of things that can be done. Her suggestions for venues are:

Ensuring there are lots of places to get water, especially in large venues, because having to walk long distances for water can be very challenging.

Offer lots of places to sit: benches, chairs, fountains, steps, anything that gives those who suffer from blood pooling a place to rest.

Have a few wheelchairs that can be used for free. Those with invisible illnesses may not need a wheelchair all the time, but Faith adds, “There have been times where I have needed a wheelchair out of the blue and it’s extremely helpful to have access to them without cost.”

Aside from her awareness-raising and great tips, Faith wants to light the way for others. One of her Instagram posts says, “I think I’m a lighthouse instead of a lifeboat. Rather than rescue people I help others find there way to shore.” The sentiment sprung from the many times in her life where Faith felt like she was constantly being rescued: non-stop doctor appointments, testing, family members waiting for her to drop to the floor, teachers watching her every move, friends always on standby. As much as she appreciated all of that, it sometimes left her feeling hopeless: “The people acting as my lifeboat had no idea where to go or what to do. I was stuck in the ocean in a storm. I needed a light from a lighthouse, something to show me there was hope, there was a place to go, and that someday I would make it to shore.” She wants to be the one shining a light on hope, helping people see they can make it to shore. Helping others feel independent in their health journey means, “They don’t have to be in a lifeboat stuck in the storm forever.”

Her advocacy work began at the age of 17 when she started spreading awareness and was struck by how many people reached out and shared what they were going through. Today, Faith continues to post on social media: advice, encouragement, education so that nobody feels as lost as she did. Her posts aim to help others feel like they can advocate for themselves with doctors, and to know where to go next. Faith advises anyone who wants to be an advocate for those with disabilities to do it, don’t wait and don’t be afraid. “It is an amazing thing to be a part of and it’s a decision I will never regret making for myself.”

As for going back in time to advise her younger self, Faith would say, “Darling, in the future your life is going to change very suddenly. It’s going to be confusing, it will be scary, you won’t feel the best most days, you’re going to lose people close to you, and you’re going to lose yourself. You will think your life is over. But, in time you will grow, find yourself again, and you will have a new life. You’ll realize that when your life changed it made you resilient, it helped you have faith, it made you appreciate all the little things, it helped you find your forever people, and it changed you, forever, and for the better. Feel all the emotions, love others, love yourself, and know that you’re stronger than your bad days.”

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