Feeling Better and the Impact of Recovery in Vestibular Support Groups
Online support groups for vestibular disorders are valuable for individuals seeking understanding and connection. However, the reaction to recovery milestones can be varied within these communities, as Johan “the Chappiness Guy” and Dr. Jessica Pagan discovered.
Tough guy Johan
The image of Johan was that of a tough, unbreakable man who never let anything affect him. However, the reality was far different. His diagnosis of vestibular migraine in 2019 shattered him emotionally and physically. This once active and strong individual found his life transformed into a never-ending nightmare.
“I was always the tough guy, the guy that never [let] anything bother me. I never show weakness; I never show sensitivity. And this brought me down to my knees,” says Johan, whose vestibular disorder began at thirty-three. “I would cry every day. I started going into depression. I started having panic attacks. So it was hard for my son and wife to see me in that position when they’ve never seen me like that before.”
Paging Dr. Jessica
In 2019, Dr. Jessica, a chiropractor, had her first encounter with a vestibular disturbance. During a conversation with a patient, she observed a significant shift in her vision. “My whole visual field just went sideways, literally,” she says. “It felt like it was kind of snowing, and it [vision] was like lagging. And my eyes wouldn’t work together to create an image. I was seeing double, and my heart obviously started pounding.” Initially told she had stress and vertigo, a second vestibular attack and a momentary loss of sight, prompted her to see an ENT, who diagnosed her with vestibular migraine and binocular vision dysfunction.
The Invisible Illness
Although many individuals with vestibular disorders may appear “normal” on the outside, they often experience debilitating symptoms such as dizzy spells, vertigo, anxiety, and fatigue. Unfortunately, outsiders may struggle to understand why these individuals cannot participate in activities, leading to losing relationships and careers and inadequate support from loved ones and healthcare professionals. Johan experienced this firsthand.
“A lot of friends kind of like walked away from my life because obviously I couldn’t do much. I couldn’t go out. I was terrified of going outside. I was super dizzy,” says Johan.
The impact of Johan’s illness extended beyond his friendships; his family also grappled with understanding a condition that attacked his body without visible signs. “My parents and my siblings. It was harder for them to comprehend what I was going through because they kept saying, ‘But you seem fine. You look normal.’ I’m like, ‘Yeah, I look normal, but I don’t feel normal on the inside’. And they’re like, ‘Maybe it’s all in your head. Maybe you’re imagining it. Maybe you are a really anxious person. That’s why this is happening.’ So it was quite challenging,” Johan says.
Jessica’s family also struggled with the challenges posed by her unseen illness. “My mom has difficulty understanding the situation, what was going on,” Jessica states. “And one of the keys that always came out from family members is, ‘Oh, you still have that?’ And that will get me so angry.”
As Jessica mentions, anger may be a common symptom of vestibular disorders, exacerbated by the constant need to explain a hidden illness without getting through to others.
Online Support Groups
Online support groups for vestibular disorders allow individuals to connect with others who understand their struggles, fostering a sense of community and reducing feelings of isolation.
Jessica and Johan joined support groups to gain insight from different perspectives on vestibular disorders and feel a sense of camaraderie.
Jessica says, “I decided to join the online groups to get some guidance and some type of insight on how to handle my condition or what it could be, and to just connect with other people that understand what I am going through and get some support.”
Johan shares that he joined groups to expand his understanding of vestibular disorders and connect with individuals who could offer support and relatable experiences.
Benefits of Support Groups
Vestibular disorders are a mystery in modern medicine, causing despair to those seeking answers and a return to normalcy. Support groups can provide benefits by addressing individual needs in an inclusive setting. Dr. Jessica realized she wasn’t alone in her struggles, while Johan learned that his illness was valid despite being perceived as imaginary.
The Road to Recovery
Currently, there is no known cure for vestibular disorders, and the amount of research conducted to shed light on this enigmatic illness is minimal. The path to recovery can be overwhelming and appear impossible for those facing the challenges of vestibular disorders. Nonetheless, some individuals have experienced improvement and found a fresh perspective on life.
Roughly one year after her diagnosis, Jessica observed a change in her symptoms. She started feeling healthier and attributes her recovery to her family and therapy. “After the year mark, I was already doing vision therapy, and that was the game changer in my whole treatment,” Jessica explains. “After a while, I started using prism glasses, and that was it. That was the missing key in my whole healing. It changed my life completely.” Jessica recalls crying in the car after receiving her first pair of prism glasses. “I could see more clearly, and it felt like my eyes relaxed, and my shoulders were relaxed as well. The anxiety melted away,” Jessica concludes.
In addition, Dr. Pagan found solace in the unwavering support of her family. With her husband and sister looking after her child, she could unwind and destress after her demanding work. Taking refreshing showers and indulging in sufficient sleep proved instrumental in revitalizing both her mind and body. Eventually, her husband began coaxing her back to normalcy by encouraging her participation in small activities.
Johan is incredibly grateful to have a wife who understands his situation. He acknowledges that not all vestibular warriors are as lucky. Thankfully, Johan’s family has supported him and motivated him to step outside his comfort zone. As a result, he attended his son’s lacrosse game.
“In the first few games that I went to, it was brutal, the lights, the screaming, the music, the people moving around, it was a lot for me to take. But I kept going. Eventually, the body starts to get situated to those things, so it becomes more normal again,” explains Johan. And when it comes to Johan’s family, they eventually came around after going to his appointments and gaining a better understanding of vestibular disorders.
Backlash of Online Support Groups
The dynamics of vestibular support groups rely on shared symptoms that create a strong bond. As a result, when members experience improvements in their conditions or lives, their focus naturally shifts from discussing difficulties to sharing their achievements and positive experiences, which may ruffle a few feathers in groups.
After Jessica’s health improved, she noticed a change in how some people treated her when she shared the positive update with her various support groups. “I was pushed to the side,” Jessica says, and she deals with the negativity by not acknowledging them. “I believe that changes come from within you.”
Johan’s tribe of online supporters left him feeling alone when he started sharing that he was feeling better. “Once I started to feel better, and no longer made posts about symptoms or challenges, but instead I made posts about happiness and traveling and resuming my normal life. I noticed many of the friends I had made in these groups started to turn away from me as if I was no longer a welcome member of the tribe because I was no longer focusing on the debilitating aspects of the illness,” Johan states. At first, Johan felt a need to protect himself from the backlash and would resort to arguing and commenting negatively on the less-than-thrilled comments he received. But he soon realized he needed to take a different approach to his wellbeing and remain positive.
Online support groups have become even more valuable with the advancement of technology, allowing people worldwide to connect, share, and learn from one another. It’s a testament to the strength and resilience of individuals like Johan and Jessica, who embrace these communities as part of their journey to manage chronic illnesses.
Johan states, “It helps you to find out information about how other people live and cope with their conditions and what kind of treatments they have tried in order to improve.”
Jessica has also shifted her focus by offering support to individuals through chat; she says, “I answer questions all the time about returning back to normalcy.”
With the help of VeDA, Jessica and Johan have discovered that their illness can be a platform for shedding light on vestibular disorders and contributing to the search for a cure. By sharing their stories and experiences, they aim to raise awareness and make the voices of people suffering from vestibular disorders heard and valued. This determination and resilience can bring about positive change and support those facing similar challenges.
It’s clear that Johan and Jessica have made progress in managing their health conditions, but they continue to face challenges and experience symptoms. They share the goal of returning to a sense of normalcy and believe in the brain’s ability to heal and reset itself. Movement plays a crucial role in their recovery, although they approach it with optimistic caution.
Johan takes a medication regimen and maintains an active lifestyle to manage his condition. He’s determined to fight against his vestibular disorder and is committed to regaining his life, even vowing to “claw” his way out again if overwhelming symptoms return.
On the other hand, Dr. Pagan opts for a more natural approach, using vitamins, herbs, and vision therapy to manage her symptoms.
Online support groups continue to be a significant resource for vestibular survivors. Every story and contribution perceived as negative or positive assists people worldwide, whether they are struggling through a diagnosis or offering ancillary support to a loved one or the medical community. Every perspective has relevance and value and raises awareness.
By Wendy Holliday-Bledsoe