Christina DeSerio is my next guest for the Chronic Illness Support Guest Blog! You can find information Christina has provided about Fibromyalgia as well as some of her journey. We hope you find this information helpful in your journey with chronic illness.
Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
I am the CEO of Aepios – a free online platform where people can find peer support for their medical condition. I am also a neuroscientist by education, with extensive training in cognitive neuroscience, developmental psychology, and vision science. Having trained in some of the most elite labs in the world, I have experience with a wide range of disorders, treatments, and research methodologies. But perhaps my most important credential comes from having experienced the ups and downs of receiving a fibromyalgia diagnosis and learning how to navigate my condition without sacrificing dreams, ambitions, and responsibilities.
How long did you suffer with symptoms before you were diagnosed?
I began experiencing symptoms of chronic fatigue, chronic pain, headaches, ulcers, and high anxiety at around twelve to thirteen years of age. I was roughly diagnosed with all of the above around that time, but the underlying cause was unclear. Fibromyalgia was suspected, but more-or-less scoffed at as an anxiety-related issue and dismissed without any serious considerations as to treatment. I was prescribed heavy medications that no thirteen-year-old should be on without serious cause, such as large doses of Xanax. Finally, I was referred to a specialist for an official fibromyalgia diagnosis at around twenty-nine years of age. Even then, it took several visits with specialists before I was finally accurately diagnosed.
When I finally received my fibromyalgia diagnosis, I felt both relieved to have a diagnosis and afraid due to the chronic nature of the illness. My loneliness and fear seemed to be making my symptoms even more pronounced. This is why communities like Aepios <www.aepios.com> are important; We focus on ensuring that nobody has to face a chronic medical diagnosis alone, and we help people learn about possible treatments for their conditions through the experiences of their peers.
What treatments have you tried? Did they help? Did you have side effects? Etc.
Like many people who suffer from fibromyalgia, I have tried a large number of possible treatments and have yet to find anything that is truly effective for managing my condition. I am optimistic that Aepios will encourage others like me to share the treatments that have been effective for them, and that together we can help each other find our way through this overwhelming process of figuring out how to manage our condition.
What are five must haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
What is something you wish you would have known when you were diagnosed?
Fibromyalgia is a real condition. It is not imagined. You are not manifesting the condition in your mind. You are in real, physical pain and you deserve for your physical needs and/or limitations to be respected as such!
How does it affect your daily life?
My daily experience is and has been a struggle for nearly as long as I can remember. Beyond the age of roughly twelve, I can’t remember getting through a day without persistent pain, frequently folding over from the pain of just standing in lines at the grocery store, headaches and migraines pounding almost constantly, shooting nerve pain sensations in my arms and legs, debilitating fatigue which has meant that I need to be sitting or (preferably) laying down to do much of my work throughout the day, and a mental fog that requires exceptional effort to overcome in order to perform at the level I require of myself. But I remember that my pain can serve as a learning experience and a gift to others and that helps me stay productive. I can’t always work for long periods of time like my peers, but I’ve learned to be kind to myself by capitalizing on the times of day that are most productive for me and allowing myself to rest when I need to. I’ve found that this strategy does allow me to get more done in a shorter period of time.
What made you decide to create Aepios and what is it?
Aepios is a free online platform where people can connect to others who share the same medical condition, and where they can learn about effective treatments from the real-world experiences of their peers.
The idea for Aepios was originated by two very close friends of mine about ten years ago. They were a couple of brothers in medical school at the time, who, while doing their rounds, realized that medicine is not always the best treatment prevailing. For example, clinicians may suggest the treatments that they are most familiar with, or treatments that they have a greater quantity of, rather than the best treatment on the market. They also saw that there were differences in which treatments were offered according to where someone lives. For example, academic centers, or teaching hospitals, appeared more likely to suggest treatments based on the latest medical breakthroughs relative to medical centers in rural counties. Hence there was a need for patients to be better informed early on following a diagnosis. And who better to provide that information than peers from all over the country who have been going through the same thing? The young doctors decided to create a centralized platform where members could learn about the best treatments out there, and where they could build a strong network of peer support that is free to members.
I met the founders of Aepios in 2019, just before I completed my graduate degree in neuroscience. Given my personal history with fibromyalgia, the mission of Aepios – to provide An Empowering Place to Interact and Openly Share – captured my heart and my attention. But while the concept was great, the website was not achieving its intended goal… yet. I quickly made it my mission to spearhead the redevelopment of the website from the ground up. Almost immediately, I threw all of my years of training and experience leading research programs and developing and managing projects into reshaping Aepios into the company it is today. Together, we redesigned the Aepios website with a more targeted goal of providing an uplifting environment for people to connect with others safely and securely. People have really responded to it! I’m very excited for the future of Aepios and I cannot wait to find more ways to help people in their battle against chronic health problems along the way.
How can those with chronic illness find information without getting overwhelmed?
When you visit www.aepios.com, you will be able to register for free membership and fill out our short questionnaire. This questionnaire is designed to effortlessly match you to the appropriate content and support group for your condition.
How can someone show support?
In addition to providing a space for people to find support, Aepios also strives to give a voice to people with chronic medical conditions who have been successful in managing their condition and want to provide support and guidance to people who are still struggling. The best ways you can do this are to (a) join Aepios and fill out our optional questionnaire to provide information about the treatments that have and have not worked for you, and (b) to join a support group and simply be there for people who are looking for your support.
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
You can find us online at www.aepios.com, or you can connect with us on Instagram @aepios_healthsupportgroups, and Facebook @aepios.
Guest Chronic Illness Blog coming soon! Guests will be asked to provide information about their illness and must haves while experiencing pain and other symptoms.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.Write something about yourself. No need to be fancy, just an overview.