Navigating the Uncharted: My Journey with Nerve-related Diagnoses
Published on:
July 26, 2023
What have you been diagnosed with?
I have been diagnosed with a list of medical conditions, including Dysautonomia, Functional Neurological Disorder (FND), Hypermobile Ehlers-Danlos Syndrome (hEDS), and Small Fiber Polyneuropathy (SFPN). These conditions make my nerves wonky and makes them function improperly.
How did you first notice something was wrong with your health?
I started experiencing continuous headaches, which was the initial indication that something was not right with my health.
When did you first start experiencing symptoms?
I first started experiencing symptoms in 2018.
How did you go about seeking a diagnosis?
Initially, I went to the emergency department (A&E) twice before going to my neurologist.
How long did it take for you to receive a diagnosis?
It took approximately 1.5 years to receive a diagnosis, which felt long and treacherous.
How did you feel when you received your diagnosis?
Weirdly, I felt a sense of relief and joy upon receiving my diagnosis. It provided some clarity and validation for the symptoms I had been experiencing.
How did you communicate your diagnosis with your loved ones?
I shared my diagnosis verbally with my loved ones during a meal, taking the opportunity to discuss it openly and honestly.
What treatments have you undergone and how have they impacted you?
I have undergone various treatments, including intravenous immunoglobulin (IVIG), intravenous medications, and erenumab. These treatments have had different impacts on my overall well-being and symptoms.
What is the most difficult part of your treatment, and how do you manage it?
The most challenging part of my treatment has been managing the central line, which requires changing lines due to infections or dealing with tough dressings. I try to handle it by staying vigilant and seeking proper medical guidance.
What has been the most challenging aspect of living with your condition?
Having to juggle education with my medical responsibilities simultaneously has been the toughest.
“It’s okay to hurt.”
How has your daily life and routine been affected by your condition?
My condition has significantly impacted my daily life. I have transitioned from being someone who was mostly at home to someone who has spent almost a year hospitalized. From someone who got straight A’s to someone who spends a long time getting myself different certifications to continue my education.
How has your condition affected your mental health and emotional well-being?
My condition has contributed to the development of severe anxiety and depression, negatively impacting my mental health and emotional well-being.
What strategies have you found helpful for managing your emotions and thoughts?
Engaging in activities such as watching Netflix and focusing on the little things that bring me joy has been helpful for managing my emotions and thoughts.
How has your diagnosis impacted your relationships with your friends and family?
Surprisingly, my diagnoses have not negatively impacted my relationships with friends and family. In fact, it has brought us closer together and fostered stronger bonds of support and understanding.
What support systems have been helpful during your health journey?
I have found all the support systems I have encountered to be equally important and beneficial throughout my health journey.
What advice would you give to someone who has recently been diagnosed with your condition?
My advice would be to live meaningfully, finding purpose and joy in everyday life despite the challenges presented by the diagnoses.
What advice would you give to your past self if you had the opportunity to go back in time?
I would tell my past self that it's okay to hurt and that experiencing pain and difficulties is a normal part of the journey.
How can others be more supportive and understanding of people with your condition?
In order to provide better support and understanding to individuals with my medical conditions, it is important to focus on understanding the person behind the diagnosis, rather than solely focusing on the label or condition they have.
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Disclaimer: Please be aware that the content of this patient story, is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.
