The Crippling Fear of Meniere’s Disease (VIDEO)
When you live with such a complicated and unpredictable illness like Meniere’s disease there’s a deep sense of fear that’s always with you.
The fear of having a vertigo attack. The fear of getting hurt, physically and emotionally.
The fear of losing friends and our loved ones who just can’t seem to understand what we’re going through.
We fear for our health, our future, for our careers if we still have them. We fear we won’t find the right doctors or that they won’t be able to help us.
The list goes on and on.
A lot of people write to me and ask me questions like, “Is it safe to go out and do this? Or is it okay if I try to do that thing I’ve wanted to do?
Of course there are no simple answers because Meniere’s disease does limit us in so many different ways. But so does the fear.
The fear keeps us locked in our homes, avoiding opportunities, and enduring regret.
It answers those unknowable questions we ask ourselves like, “Can I do this thing I’ve wanted to do for so long?” with a resounding no.
But it’s not a real answer. It’s just the fear. And it makes our already difficult lives that much more difficult.
Reframing the Fear:
I watched an interview the other day with the comedian Louis CK that really changed the way I think about the fear.
He explained that the thing that helps us face our fear more than anything else, is to learning how to recover from failure. He said, “If you can recover from things not going well, then the worst that happens is, this is going to be a total wreck, but I know how to recover. I know how to be okay after I wasn’t”
And it really resonated with me. It gave me goosebumps. And it made me think about Meniere’s disease differently.
Because it put something I’ve felt for a long time into words: we can learn how to recover. It’s a mindset, but it’s also a skill that we can learn and become better at.
We can learn how to be okay after we’re not. Even if recovery takes long time. Or if you have more bad days than good days. When you know you can recover, everything changes. It’s like seeing your life through a new lens.
And the answers to those unknowable questions start to change too.
It becomes: “I don’t know if I can do this thing that I want to do. But I’ve done other things that I didn’t know if I could do, when I did them, and one way or another I was eventually okay. So I’m not afraid to try. Because I know how to recover if things go wrong.”
I’ll leave you with this:
What is the one thing that you really want to do, but haven’t? And what’s holding you back? Because if it’s just fear, then you can learn how to recover and finally do the thing you’ve wanted to do for so long knowing full well that it will be worth it.
And that even if it ends in disaster, you will be okay again after you’re not.
Learn more about how to recover and facing your fear:
Chronic Illness or: How I Learned to Stop Worrying and Fight for my Health
Chronic Illness and the Fight Against Feeling Lazy
Renee Van Uytven
Well let me tell you something, I woke up this morning and the bedroom had changed in a carousel.I swore, got up , very very dizzy , swallowed pills , etc. Things got a little better, but fear set in , I have my son coming over for a visit. And had things to do, lots of them, and I did a big part of it, and the fear went away.Nice! ” I hope this will be better tomorrow !” I said to my husband, ” Of course it will be ” he said”!t always takes a couple of days,you know that” So I did things, that I thought , I could not do , and why was I so anxious , I know knew I was going to recover. And now I heard you telling me the same thing, thanks Glenn.
Glenn
I’m glad to hear that Renee! It’s such a simple way to think about the things we’re afraid to do, but it’s also so liberating.
Ellie
This is the MOST important topic- FEAR. I was listening to an interview with Anita Moorjani, who died and came back-totally worth listening, so she came back with the message- FEAR was what brought her to illness. Fear of not doing right, eating right, saying right etc. Glenn, you will also love interview with Neil Patel on youtube- What is disease-that guy will really inspire you. Again, he touches the Fear factor. Thank you!
Glenn
Thanks Ellie!
lindasiegel
thank you Glenn for your inspiring post. Yes, I live in great fear and as a result, if I want to go somewhere near or far, I always have someone with me. I guess I sort of think if I have someone with me, I won’t get sick. That is so far from true. However, I am working on my fears regarding MD and hope that I can find a change in my future.
Glenn
Hi Linda. I think that keeping someone with you as a precaution when you go out and do thing is a great way to address the fear! I didn’t have time to talk specifics in this post, but the fact that you do go out and do things is wonderful. Planning and being careful is always important.
Cheryl
Great video. I just read somewhere (can’t remember where of course!) that fear= Face Everything and Recover. I thought that was a powerful line, not that I follow it but I’m a work in progress one month after labyrinthectomy surgery. Keep up the great work Glenn!
Glenn
Thanks Cheryl! And good luck with your recovery. Keep us posted!
Emma Rouse
Hi can I ask if yourself glen or anyone else has flown and how this has worked out whether you was ok or whether it brought on full vertigo attack during and after departing many thanks Emma. . X
Glenn
Hi Emma, I’ve flown lots of times, including a recent trip from Florida to Europe for my honeymoon. Traveling can be tiring and stressful, but its never triggered an attack for me. The plane cabins are pressurized, and when your ears pop on planes, thats your middle ear rather than your inner ear. You should be fine, but bring meds with you to be safe and maybe even consider wearing Earplanes. They’re earplugs that help to prevent your ears from popping on the plane. Best of luck!
Laurie Wager
Such a great video Glenn, thank you so much! The F word plays such a huge role in everyone’s life but for those of us with MD it can be paralyzing! Recently I attended a three and a half day forum to learn how I could live an extroidinary life. When I registered and spoke with the liaison person I told her of my health challenges and that if I had a vertigo episode I would need to lay down some where until it passed. The forum went from 9am to 10pm for 3 days straight. I was afraid it would be too much but didn’t let that fear stop me. I made it through day 1 vertigo free and was very excited for day 2. Unfortunately on day 2, right before our dinner break at 7pm the vertigo hit me like a ton of bricks. The episode lasted about 3 hours but I managed to drive home after it passed and get some sleep. I awoke on day 3 and had to decide if the FEAR of another dreaded episode was going to stop me or if I was going to carry on. I chose to carry on and headed to the forum for 9am. The day went well up until we broke for dinner, again at 7 pm. I was walking with a new friend to find a place to have dinner and the vertigo came worse than the day before. We were about 15 minute walk from the forum and the only thing I could do was lay down in a park while the world spun around me. The next thing I know I am throwing up on all fours beside a tree in a park! Hilarious if you try to envision it! My absolute WORST FEAR REALIZED! People were walking by, probably thinking I was drunk and not paying much heed. My new friend hailed a cab and got me back to the forum where I layed down until my husband came so he could drive me home. The whole situation happened and I survived! I learned so much about FEAR during these vertigo episodes. The worst thing we FEAR just might happen and when it does we will go through it and be ok. Shortly after my MD diagnosis last September I spent countless hours home, afraid to do anything because of fear. Life is too short and precious to take a back seat to this damn disease on a daily basis. If I’m able I will continue to carry on, face those fears and do it anyway!
Glenn
Thank you so much for sharing this story Laurie. You have in incredible attitude and mindset! I’ve always felt that planning for all contingencies (as you did at the forum) is definitely another important piece of the puzzle. But realizing that even if the worst happens that you know how to be okay again after your not is such a powerful idea. I’m glad this concept resonated with you as much as it did with me and thank you so much for sharing your experience!
Al Basso
On one of my “dark” days I wrote about what it is like living with menieres. I think I listed over 50 fears, and I still was not satisfied that I had fully explained what it is like to live with this condition. To face those fears; you put your life at risk, and it is simply doing what people do every day. The sudden onset and unpredictability challenges even simple tasks. Yes we survive; but only until the day we realise one of those fears and if you try live a normal life, it is just a waiting game until it happens.
Glenn
I know what you mean al. But I don’t necessarily agree that you have to put your life at risk to face the fears. The other important piece that I didn’t mention in this video is being prepared. If you are going to do something “risky,” it’s important to plan for every contingency and have a way out if things go bad. Acceptance also plays an important role. I no longer try to live my life like I used to. I have to follow strict routines and manage my lifestyle at all times. My normal today is not what it used to be. But knowing that I know how to be okay again after I’m not is hugely liberating.
Bill Denne
Watched your first video, and have started on the second, “crippling fear……”
After 5 or 6 years of coping, and knowing that friends and family really try to understand, I am going to use at least one of your recordings to share. (my only real “crutch” has been and occasional visit to: menieres.org) with family folks.
BUT , only for those that seem interested, because I lose patience with people that “prattle on” about their specific “hurts”, and work very hard at not going there. I’ve seen too many friends and family (and strangers) struggle with “real hurt”, and do it well , with strength and pride. About the only time I tell anyone about this is when I have to engage in a meaningful dialog (business, life, shopping, fun….etc.)
Thanks for your effort.
Tom
Thank you for this. I was diagnosed with Menieres just last week after having about 5 vertigo episodes within the past year. And it almost seems like the symptoms got worse after I got the news from my neurologist. I’m getting a second opinion but I just have this fear that these symptoms will be with me for the rest of my life and it has left me in a deep funk. You’re right, fear is the biggest factor in this condition and I’m taking steps to overcome it. But I’m still in the very early stages.
Stacy McCorkle
I certainly could reflect over the last 23 years of dealing with a severe case of Meniere’s. Through time, my fears or stressers have changed with my life patterns. Fear of losing my job….. it did happen and I actually was better without the stress. Fear of not understanding or hearing what others say and say the wrong thing….. this still happens and I don’t go out much or have a social. If it’s something I have to plan ahead of time, I get worse because it gives me too much time to stress over it. Goal is to stay busy and not allow long moments to build on the fear or get a friend to go with me. Fear of losing family and friends who just don’t get it and think I can “be fixed” by just excercising or being lazy/giving in. Fear became real…. divorced after a 33 year marriage. My sons blamed me along with the ex, my sister & family. Ex had me declared mentally unstable and put in a mental hospital for awhile….. I was declared depressed buy sane, not suicidal. He often told me it would better if I were dead, then threaten to burn me in the house to make it look like an accident if I didn’t give up our nice big home. I lived in another town after going to a safe house for a few weeks with counseling. Cut ties with everyone who tried to bully or add more stress on my back…. That left me with 1 cousin, and 2 friends that could help or visit at times. The key words now is “I AM A SURVIVOR”. Take it a day at a time or just a few minutes at a time. Blow off people who want to add to my already long quilt list that I threw away. I am the only one who is going to look after me, no one else. I never dreamed I would be living in this way at the age of 55. God had to make me week physically and emotionally to make me a Survivor. Oh, I also have had to have 3 spinal surgeries, 2 lower back and my neck. Allergic to pain meds except Tylenol and Ibuprofen due to autoimmune disorder. Then depression led me to comfort foods which lead to diabetes. I celebrate the good days the best I can and get thorugh the bad days thinking of what all I wanted to do when I have those good days. The country song “Life is a Dance…. we learn as we go. Sometimes we lead and sometimes we follow….” Keeping a warped sense of humor and laughing lots is my favorite medicine. My eyes are now going bad on me….. the thing I fear the most is following genetically in my dad’s footsteps. He died Oct. 28th last year, deaf from Meniere’s (his didn’t give constant vertigo though), immaculare generation and glaucoma (which Ir have had a few years and gettting worse) and dementia. I have been learning that deafness is thought to one of the causes of dementia. I fear being deaf, blind and losing my mind like Dad did. Tears are in my eyes as I write. It is difficult to sleep lately due to my brain won’t shut off for sleep. I’ve been told in the early stages that Meniere’s won’t kill me but will take away all my quality of life. The older I get, the more body parts going awall…. the more I fear of losing me and who will lovem then when I have few that loved me as me. Didn’t mean to write so much, but this is a tough week. Meniere’s Support Sites have been a God-send. I wish they were available 23 years ago….. Faith, Hope, and Joy are found within our own hearts, souls and choices. Staying positive and blocking negative people out regardless of thier relation to me was the hardest, yet the best thing I did. They won’t change if you keep allowing them to disrespect, belittle, back stab and are not there with a good attitude when you do need the…… so why put up with their crap? If you are one of the thoughtful, caring comrades fighting this battle with me, God bless you and thanks! It does help to know there are people who know, understand, don’t criticize, or go to a family member and ask “what is the matter with Stacy?” If they care, they would call and ask me with an offer to be a friend. I thought at one time I was blessed with such a loving family who would never do the things that’s happened to me. I rarely go out. Try to see my grandchildren as much as possible with little treats to spoil, cherishing every moment. I rarely tell my sons how I feel because they rarely ask or want to know. I just smile, ask how they are doing and remind them how much Iove them. Thankful after 3 years they are allowing me back into their lives and angry over the divorce. My church pastor has not been there for me in any way. If I were able to attend, I don’t think I will go back there. Not holding a grudge, but need to go where I can feel a much needed uplifting, not eyes of judging….. Thanks again if you cared to read, say a prayer not for me, but for those who don’t understand or have “eyes to see” others pain. ~Stacu
Stacy McCorkle
I’ve not slept in over 2 days and after re-reading my post I am so embarrassed over spelling errors and typos. I have a bachelors degree in social work which I returned to college at the age of 45. Worked 2 years after graduating, but continued health lose caused me to be fired for not being able to meet the demands. I had to hear it from my husband and family of what a waste that was…. while I was proud of that accomplishment. I worked, attended 2 different colleges for needed courses and cared of my mother who was dying of lung cancer to graducate with honors at both colleges. Realitives on my ex-husband’s side recenting my education. I’m ready for good things now…. Seems like I’ve had my share and ready to for wonderful change!
Joe Mellon
Glenn,
Thanks for the video.
Glenn
You’re welcome Joe! This one is my favorite of all the videos I’ve done.
Kim Silver
Your message today hit home today. Bilateral diagnosis after unilateral diagnosis three years ago. I’m still planning to plug away at my second half marathon training. Fear has no place in Meniere’s. We should trademark that 🙂 Thank you. You pulled me out of my dark space quickly after I fell in the rabbit hole. Your messaging in general is refreshing. It’s too easy to complain but quite uplifting to find hope and resilience within ourselves.
Glenn
So glad to hear this Kim! Keep us posted on your progress!
Martin Hudson
Hi Glenn, useful info, thanks. I have had Meniere’s since 2001, February, right ear destroyed by summer 2006. I was given diuretics but told to avoid coffee, a diuretic. That lack of logic seemed irrational. I found the prescription for a water pill made the swelling in the inner ear much worse, as fluid was drained off the body in turn enhanced water retention in vital areas of the body, such as the inner ear. Also the potassium loss was complicating the scene. Coffee, much milder, with the caffeine worked better because the caffeine restricted fluid fluid into the ear, making it minimally better. A myth I was told by the doctor that vertigo was caused by the rupturing of the cochlea, which made no sense and later discovered it was changes in pressure against the nerves. After all, how could the cochlea heal in a half hour or even four, as in many vertigo events I have endured. Also, the anti-dizzy medications enhanced the vertigo while Ibuprofen numbed the vertigo, making it more manageable. Just some thoughts.
David
14yrs ago I had my first menieres attack and was terrified. I was diagnosed shortly after my first attack with MD . Over the last couple years my attacks are much more severe, lasting up to 12hours in some cases and everyday I battle with vertigo, nausea, head and neck pain,and brain fog. Fear of MD and it’s effects on my life have been an extremely heavy weight to bare in the last couple of months, so much so that I feel lost and terrified of what my future with MD may hold for me and my family on a daily basis. It is difficult to get a medical professional to treat me as they all fear the disease as they do not know enough about it or how to treat it. I’m doing the best I can at managing to pick up the pieces, and controlling my triggrss, but not knowing when an attack will strike can be debilitating. I have shown several of your videos to loved ones and co workers so they know what I’m dealing with and it has helped them understand more of what I’m going through. Thank you for your videos and web site. It has given me some hope knowing that I am not alone and that there is a community of people all here to share and help. Thank you so much for doing this.