“Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it.” – Hannah Brencher
“When we no longer are able to change a situation, we are challenged to change ourselves.” – Viktor E. Frankl
I’m going to be blunt.
Living with Meniere’s disease can be a traumatic experience, especially when you have suffered for a long time.
The hopeless despair and seemingly endless torture that so many of us have to endure is enough to leave a deep emotional scar on the toughest of us. And many doctors only compound the fear, leaving us worse for wear.
When faced with such adversity, it’s hard to believe that anyone can learn to live with Meniere’s disease. The odds are definitely not in our favor. Yet this is the reality of our situation and one that untold millions of people face on a daily basis.
The bottom line is that, at the end of the day, the resulting trauma needs to be addressed, and even the strongest of personal support networks may not be enough to help you.
Over the years, I have experienced the damage first-hand that unresolved trauma can cause. I’ve witnessed the chaos and devastation that can manifest years, even decades, after the trauma occurred. But I’ve also found good ways to address it, sooner rather than later.
When I was 18 years old, one of my best friends suddenly and unexpectedly passed away. As you can imagine, I didn’t take it very well. It happened only a few weeks before my high school graduation and I was completely devastated. My memories of prom, graduation, and my last summer before college, are all tainted with heartache.
At the funeral, I was a pallbearer, and to this day, it’s one of the hardest things I’ve ever had to do. Hundreds of people came to the church. Everybody loved him. Even our teachers were there.
I kept it together through the ceremony, and when it was over, I helped carry his coffin to the hearse. But as the car drove away, my emotional house of cards imploded and I fell apart at the seams. He was taken from the world so young. The finality of it all felt like a kick to the stomach. It was hard to breathe.
For years, I would flashback to that moment. It was seared onto the back of my eyelids. And each time, I could feel the pain all over again.
Throughout the years, I had always struggled with anxiety, but everything changed after my friend died. My baseline level of anxiety went through the roof and I started having panic attacks. I became a much angrier person and was harder to deal with.
Years later, when I looked back at my experience, I realized that I had never properly grieved. If I’m being honest, I didn’t really do anything at all to process the death of my friend. The emotions were still bottled up inside of me, and I would lash out at innocent bystanders, leaving a path of destruction in my wake. But at the time I didn’t understand.
It wasn’t until much later, in therapy, that the connection between the trauma and my anxiety became clear.
Counseling, or “talk therapy,” can be a cathartic and overwhelmingly positive experience when at its best. But just as you need to find the right doctor to treat your Meniere’s disease, you’ll need to find the right therapist, and a therapeutic style that works for you.
For me personally, a type of therapy called Cognitive Behavioral Therapy was what worked best. I suspect, however, that my success has had more to do with my actual therapist than the type of therapy.
When I was diagnosed with Meniere’s disease, I had already been with my therapist for a while, working through my anxiety. His personality really seemed to mesh with mine, and he was always positive, encouraging, and hopeful.
He had helped me to see the connection between the trauma of losing my friend and the issues I was having with anxiety. Slowly but surely, we were able to work through it, and I was finally able to grieve. For the first time, I was able to face the emotions and begin to process them. Eventually, my anxiety did improve.
When I started to struggle with Meniere’s, I was grateful to have him in my life. Like most people, he had never heard of Meniere’s disease but he took the time to listen and learn about it. When I was diagnosed, he helped me to stay calm and in the moment while it seemed like my world was falling apart.
He also helped me process the psychological turmoil and crazy mishmash of emotions that I was experiencing at the time. And when I finally found an amazing doctor to treat my Meniere’s disease, the one who set me on the right path, I was able to actually hear what he had to say. My therapist had kept me grounded enough to listen, and to be open to new information.
I’ve been with the same therapist for over eight years now. If you can find a therapist you trust, it can be a powerfully rewarding experience and one that I can’t recommend enough.
The one problem with therapy is that it can be expensive. But if counseling doesn’t fit into your budget, you still have other options.
One option, albeit a slightly less professional one, is a wonderful service called 7 Cups. Essentially, 7 Cups is a free service that will connect you with someone who is willing to listen. It won’t necessarily be a therapist, but it will be a caring listener who wants to help. It’s not a perfect solution, but if you are having a tough time, and just want to talk to someone, it can be a great outlet.
Support groups are another a good option. In the US, The Vestibular Disorders Association has searchable directory of local support groups. There aren’t a huge number of groups, but if you search by location, there might be support group meetings close to where you live. If not, there are also vibrant support group communities online. Having a place to openly vent frustrations, celebrate successes, and communicate with others in your situation can be extremely helpful.
Online support group communities exist in several locations.
There are several forums and message boards on the internet solely devoted to Meniere’s disease:
- Meniere’s Talk Forum
- Daily Strength: Meniere’s Disease Forum
- Meniere’s disease Forum on Reddit (Subreddit)
But there are also great support groups on Facebook. Facebook allows you to create community groups around a central topic, and it’s a great platform for Meniere’s disease support groups. There are a good number of them, some with thousands of highly active and supportive members. Questions are generally answered very quickly and by a large number of people.
- Meniere’s Disease Support Group– This is the group I run on Facebook
- MENIERES SUPPORT GROUP
- Menieres: Stay Positive
- Living with Meniere’s Disease
- Spin Cycle: Meniere’s Disease Chat and Support Group
- Meniere’s Disease (Public Group)
- Meniere’s World Wide
- Vestibular Disorders Support Group
- I suffer from Vertigo/Meniere’s disease
- Meniere’s Disease Group – You are not alone
- Meniere’s Disease UK
- Meniere’s Disease Australia: Down Under Dizzies
- Menieres: Eat Well: Stay Healthy
- Meniere’s Vertigo Tinnitus TMJ
These groups can be a fantastic resource. Most people find it intensely liberating to connect with a huge community of people who share their experiences and understand what they are going through. But I have to warn you: if you find that spending time in these communities is bringing you down, it’s best to avoid them for a while. Because of the very nature of how the groups are set up, from time to time, they can have a “misery loves company” sort of feel to them. If any group is ever putting a damper on your mood in any way, simply try a different group, or explore other positive avenues.
In my experience, the mental and emotional impact of Meniere’s disease is something that far too many people overlook. And I get it. So many of us are constantly fighting for our health, every single day. But whether you realize it or not, the mental and emotional aspects of Meniere’s disease are probably affecting you in some way.
Having a strategy to deal with them can make all the difference. If you have never given therapy or counseling a chance, I encourage you to keep an open mind and give it a try!
You just might be surprised to find how much it helps.