Glenn Schweitzer

@glenn-schweitzer | contributor
In 2011, during Glenn Schweitzer’s senior year in college, the vertigo started and his life changed. He was diagnosed with a rare and incurable chronic illness called Meniere’s disease, and he was sure his life was over. But over the years, he has learned to manage his symptoms and found ways to cope. Today, his goal to teach what he’s learned and help others who are still suffering through his blog: Mind Over Meniere’s. There is always so much hope!

Meniere's Disease: How to Get Enough Rest

I was exhausted. Drained of my last reserves. But I still couldn’t rest. I was leaving in the morning for a trip to Maryland to see my family and there was still too much left to do. It was already 8 p.m. I hadn’t even started to pack. My stress levels were high and I was afraid my Meniere’s disease symptoms would flare up during the trip. My tinnitus was blaring much louder than usual… a bad sign. I wasn’t able to relax until the plane was in the air. Fast-forward five days and I’m back from what actually ended up being a wonderful trip. I had a great time and got to spend some quality time with my family. I also feel like my batteries are finally recharged, which is kind of strange because it wasn’t really a relaxing trip in the truest sense of the word. We walked a lot, went out to eat several times, and even went hiking one morning. I pushed myself too hard on more than one occasion and it took a delicate balancing act to keep myself feeling well enough to have a good time. But disconnecting from my daily routine and responsibilities worked wonders on my stress levels. I really enjoyed myself and was mentally present the entire time. And it got me thinking. When I’m having a bad day, it’s always so hard to just let myself rest. I always feel so lazy and useless, even when I know deep down it’s what I need to feel better. But there are times when I am able to fully disengage and not feel an ounce of laziness. I never feel guilty about resting when I’m on a trip or vacation. As I flew home, it dawned on me that the best way to rest and not feel lazy just might be to practice the principals of a good vacation. There’s a reason people love to travel: It feels amazing to disconnect from your regularly scheduled life for a short while and go on an adventure. Obviously, laying in bed and watching Netflix when your chronic illness has made you too sick to do anything else is no vacation. But when you look closely at the essence of travel, there are important takeaways that just might help you get the rest you need. Ultimately, adopting a vacation mindset boils down to four key elements: a change in routine, disconnecting from your responsibilities, having something to look forward to, and self-pampering. 1. Change something. I believe the first step in cultivating a vacation mindset is to change something in my environment. I’ve found that it’s always so much easier to relax when I’m in a situation that feels like I’m supposed to be relaxing. We normally feel this on trips, but I can recreate the feeling whenever you need to rest. All I have to do is deviate a little bit from my routine. It can be as simple as spending time in a different part of the house. For example, if you normally lay in bed when you don’t feel well, lay on the couch instead, or vice versa. Take a few minutes to create a relaxing space that is different from your normal routine. Going outside can help too. If possible, you can even make arrangements to stay with a close friend or relative, or at a hotel if affordable. A complete change in scenery can bring on a vacation mindset much faster. 2. Disengage from responsibility. Before I left for my trip, I had a lot of loose ends to tie up. I wanted to get as much of my work and responsibilities taken care of as possible so I wouldn’t have to worry about them while I was gone. I wasn’t able to get to everything. But I was able to get to most of the things that mattered, and I had at least addressed everything else, closing every one of my open tasks, one way or another. When I have unfinished tasks and unaddressed problems looming over me the whole time, I constantly find myself struggling to relax. To be clear, I don’t think you have to finish everything for this to work. But I think you do need to address each item on your to-do list. If any of your tasks or responsibilities will only take a couple of minutes to finish, I recommend getting them out of the way whenever possible. For everything else, notify any relevant people that you aren’t feeling well and will be taking time off to rest. Once I’ve addressed all of my responsibilities, I’m able to get the rest I need without second-guessing how I’m spending my time. 3. Have something to look forward to. When I have a vacation planned out, the excitement and anticipation can be as enjoyable as the trip itself. It gives me something to look forward to, enhancing the days leading up to it. It makes the whole experience that much more special. I know that there is nothing special or exciting about being too sick to do anything else, but this principal can make bad days more bearable. I found the best way to do this is to have something I really enjoy ready to go at all times. Maybe it’s a great TV show that I’ve been waiting to watch, or a new movie or documentary. Maybe it’s an exciting new book or audio book. The more excited I am to see, watch, read or hear it, the better off I will be when it’s time to rest. Purposefully enjoying something I have been waiting for is so much easier to do, without feeling lazy, than mindlessly watching TV, or something similar. 4. Pamper yourself. Most people like to have a good time on vacation and will indulge in the things that make them feel good. Whether that means staying at a nice hotel, getting a massage, eating an extra dessert, or drinking a margarita or two, everyone likes to pamper themselves when they travel. We can apply this same thinking to our most difficult days. I may not be able to control the fact that I’m too sick to do anything other than rest, but surrounding that non-choice are a thousand other choices that I can make. On our worst days, we can choose to prioritize self care over everything else. I’ll give a few examples: Drink more water. Get extra sleep, and if you feel tired, take a nap. Feeling hungry? Have a snack, or if you feel so inclined, some comfort food. Enjoy a nice hot shower or a bath. Also remember that there are things that you can choose to do to feel better. You can meditate or practice gratitude, or engage with intellectually stimulating content, like a documentary. You can also occupy yourself with a relaxing hobby like painting or knitting. I may feel terrible, but I can have a more enjoyable and relaxing day if I take the time to pamper myself more than I normally would. I’ve said it before and I’ll say it again: Resting is not laziness, it’s medicine, and it doesn’t have to taste bitter going down. When you live with a chronic illness, there will always be difficult days. It’s a part of the deal and when they happen, it can be difficult to just let yourself rest without feeling lazy or guilty. But I think this subtle shift in perspective changes the game altogether. Resting becomes something you’ve planned for, a chance to let go of responsibilities and enjoy specific shows or movies you’ve been waiting to see. An opportunity to pamper yourself in a way that you normally may not have time for. Resting doesn’t have to be difficult or a struggle, but rather something positive, and a chance to heal yourself at the deepest levels. Follow this journey on Mind Over Meniere’s. The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

What Life With Meniere’s Disease Is Like

Most people will never understand what it’s like to stare down the barrel of a complex medical diagnosis. That’s not to say they’ll never get sick. They might. And it might be terrible. But most of the time, it will at least be easy to comprehend. The implications will be clear. The treatment options will be explained, and the doctor will be knowledgeable. They will know what to do next. But for the unlucky few who suffer from a rare disease, like I do, there are no certainties. There is little understanding. There is pain, confusion and despair. Hope is simply not a part of the equation. And that’s a big problem, because there is always hope. Meniere’s Disease Most people have never heard of Meniere’s disease. When I was diagnosed, I had never heard of it either. To this day, I’ve only ever met one other Meniere’s patient in person. But it’s out there, silently destroying lives in the shadow of the general public’s consciousness. Over the years, I’ve tried to think of a good way to explain Meniere’s disease, but it’s hard to express. There is a nuance that gets lost in translation. Even my fiancée, Megan, who has been there for me every step of the way, gets teary-eyed at some of my writing and asks, “Is this really how you felt?” If our closest friends and family don’t understand, it’s hard to be understood by the rest of society. And that’s a major hurdle for raising awareness. So I’m going to give it a shot and try to explain what it’s like to walk in my shoes. If you have Meniere’s disease and relate to this, please share this with your friends and family. Imagine for a Moment I want you to close your eyes and think back to a time in your life when everything was good. Now imagine one day, you’re walking along when all of a sudden, the world starts to violently spin around you. You fall to the ground and hold on for dear life. Unbeknownst to you, you are experiencing vertigo. It’s like you’re drunk, but you haven’t had a sip of alcohol. Your brain, suddenly in shock, thinks you might be poisoned, so to mitigate the perceived threat, a wave of nausea floods your system. You start to vomit over and over again. Your body wants to get the poison out. But it doesn’t help, because you’re not poisoned. The minutes turn to hours, and the world is still spinning. You’re terrified and confused, and you can’t walk. In this moment of crisis it won’t occur to you, but there have been so many things you have taken for granted, processes quietly working away in the background of your brain to keep your world intact. You believe equilibrium is a constant like gravity, but it’s not. Your balance comes with no guarantees. It’s controlled by your vestibular system, and that system can become compromised. Hours later, when the room finally stabilizes, you are left with more questions than answers. “What’s wrong with me?” you ask God, or the universe or maybe no one in particular. So you go to your doctor. But your doctor doesn’t know what’s going on either. If you’re lucky, you’ll end up visiting an otolaryngologist who has some experience with balance disorders. If you’re unlucky, you may end up going years before you speak with anyone who has any idea of what’s going on, suffering with no explanation. If you do get lucky, your “luck” might sound something like this: “We’re going to have to run some tests, but it looks like you have Meniere’s disease. There is no cure. They don’t know what causes it. Each attack of vertigo will damage your hearing slightly and over time can destroy it completely. You have to stop drinking coffee and alcohol. You have to lower your stress. You have to eat a low sodium diet.” You leave the doctor’s office scared and broken. You want to understand but nothing makes sense. Your problem just became very real, and very permanent. When you get back home you go to Google and you start searching. You try to figure it out. But everything gets worse because so much of what you find conflicts with everything else you find. Quickly, a picture of the worst case scenario becomes fixed in your mind. And all the while you’re suffering. You’re having vertigo attacks. There is a constant feeling of pressure in your ear. Your hearing is impaired, and you panic about going deaf. Inexplicably, your senses turn against you. Bright lights and noisy environments overwhelm you in an instant. Your job is in jeopardy, too. Your employers don’t understand. They think you’re overreacting. That’s assuming you still have a job. The fear of having a vertigo attack makes it hard to drive or even leave the house. And when you aren’t having vertigo, you are still cognitively impaired by brain fog and fatigue. Nothing is certain anymore, and no one understands. You look fine, so no one thinks you’re sick, but you are, and in a big way. No one believes your pain, and you don’t know what to do next. The Power of a Story It’s a dark picture, I know, and it’s easy to see why so many people lose hope. But it’s not all bad. Many people are able to improve their symptoms with careful lifestyle management and medication. In more stubborn cases, a surgical approach can help as well. Many people, like me, learn to live in harmony with their disease and go on to live productive lives. However, it’s not an easy journey. And when the people around us don’t understand, it can make everything so much more difficult. Yet it’s possible to succeed, and that possibility is what gives us hope. I started a blog and wrote a book to show people that. It took years for me to find ways to cope and manage my symptoms. I share my stories with the world, because if information is the missing piece, then no one should ever have to suffer for years. If you or someone you love has Meniere’s disease, I encourage you to share your story, too. The power of your story is enormous and can help the cause in so many ways. It will help and inspire others. It will raise awareness and educate those around you. It will help you process your life and bring you clarity. Start a blog or a support group. Write a journal or a book. Share a post or a tweet. Or even just leave a comment on the bottom of this page. There is no wrong way to begin. If you live to inspire, one day someone will say, “Because of you, I never gave up.” You can help make difference. In a world where no one is aware, our voices will be heard together, and everyone will understand. Want to Learn More? My new book — “Mind Over Meniere’s: How I Conquered Meniere’s Disease and Learned to Thrive” — is available now on Amazon as an eBook and paperback! I believe no matter where you are in your journey with Meniere’s disease, this book might help you improve. 20 percent of the profits through September will be donated to the Vestibular Disorders Association in support of Balance Awareness Week! Follow this journey on  Mind Over Meniere’s .

How to Support a Loved One With a Chronic or Invisible Illness

For a long time now, I have lived with a chronic and invisible illness called Meniere’s disease. At this point, I have learned to live with it and on most days, I’m able to manage my symptoms surprisingly well. But there is no cure for my condition; it’s always there, lurking in the shadows, waiting to strike. And when it does, it can be hard for those closest to me to understand what I’m going through. They try to support me, but despite their best efforts, it’s easy to end up feeling worse. I know it’s not intentional, but the guilt and shame I experience in these moments feels the same. When you don’t look sick, it can be hard for people to have empathy or even wrap their minds around your situation. But the pain is real. And no one wants to be sick. We want the same things as everyone else. We want to live life on our own terms. We want to find love and be loved and accepted. We want to be happy. We have dreams and aspirations. But we also have to live with the unfortunate reality of unwanted limitations. If someone you care about has a chronic or invisible illness, there is a right way and a wrong way to help them. They need you more than ever, but in ways you probably didn’t expect. The five caregiver commandments: 1. Accept your powerlessness. Watching a loved one in pain is one of the hardest things in the world. It can feel like being trapped in a nightmare. You want to make them to feel better, but you just can’t. There are many ways to support your loved one, but you need to understand that you are powerless to make them better. It’s not your job to take away their pain. You need to acknowledge this, and truly accept it, before you will ever be able to make difference for them. Your love and understanding is the medicine they need. 2. Take time to learn about their illness. The first step towards understanding is taking the time to learn about their illness. At the very least, learn the basics. What are the symptoms? What are the treatments? It can be helpful to read the experiences of others. You won’t be able to make them better, but it’s an empowering step. Having an intellectual understanding goes a long way towards providing effective care. It opens the door to empathy. Talk to your loved one. Ask them about their experience. Ask them questions if you don’t understand, don’t just guess. It may be hard for them to articulate the answers, but be patient. Really try to understand. Try to put yourself in their shoes. What might your life look like if the same limitations were suddenly placed on you? The better you can understand their illness, the better off you’ll be. The love and support you give will be authentic in their eyes. I also recommend reading “The Spoon Theory” by Christine Miserandino at butyoudontlooksick.com. It’s a fantastic article and the most elegant description of what it’s like to live with a chronic illness I have ever come across. 3. Be with them, but give them space when they need it. One of the best ways to support someone with a chronic illness is to just simply be with them. Living with a chronic illness can be incredibly lonely. It’s easy to feel disconnected from the world when you are so severely limited. It can be hard to relate to everyone else. One of the things your loved one needs from you the most is companionship. Never underestimate the power of spending quality time with someone you care about when they are in pain. Sometimes, just knowing we are not alone in our moment of pain is enough to carry us through. But the reverse is also true. There will be times when the best thing you can do is to give your loved one space. Getting enough sleep and rest is a critical part of managing a chronic illness. There will be times when your loved one needs you, but there will also be times when they need to be alone. If they don’t have the energy to spend time with you, never hold it against them. It’s not a reflection of some hidden resentment they harbor. In fact, it’s not personal at all. No one would rather stay home in bed. But when you have a chronic illness, you’re forced to make hard choices, and it’s so much harder when you feel like you’ve let someone down that you care about. By giving them space, and not taking it personally, you are supporting them more than you can possibly know. 4. Validate their pain. At the end of the day, what most people with a chronic illness so desperately seek is to be heard, to be understood, to be accepted, but above all else, to be validated. Your loved one lives in a reality where almost no one truly understands what they’re going through. When they’re in pain, most people won’t believe them or even care enough to try. But you can be the one who understands. You can be the one who believes. You can’t make them feel better, but you can make them feel heard. Show them you know their pain is real. By far, this is the most powerful way you can give your love and support. When they feel neglected by the world, a compassionate validation can give them the strength they need to persevere. In that moment, it can change everything for them. 5. Don’t get frustrated. The worst part of a chronic illness is usually not the illness. Everyone gets sick from time to time. It’s the never ending repetitive nature that makes it so hard. We get sick. Then we get sick again. At times, it will get frustrating, but it’s so important to remain calm. When your loved one is in pain, they will be at the mercy of forces outside of their control. They may be emotionally needy, distant, angry or sad. Regardless, it’s safe to say that the interaction may not be as rational as you would expect under normal circumstances. And it’s easy to lose your cool when your good intentions are met with a reaction you didn’t expect. Pain can bring out our worst qualities. But if you can stay calm and keep a cool head, the tension will always pass. You will be supporting them in a way that will make their pain easier to endure. At the very least, it will give them one less thing to worry about. It can be difficult to support your loved one in this way, but it’s worth the effort. Conclusion: When someone you care about becomes chronically ill, it can force a wedge into the relationship. And if you are unprepared, it can push away the person you are trying to support. But you can bridge the gap if you approach it with the right understanding. It can strengthen the bond and offer the opportunity for growth, both together and as individuals. If you can practice these five principles, you will support your loved one in a way that truly makes a difference. You can be a beacon of hope, shining light into the darkness of their day. In a world of people who don’t understand, you can be the one who does. Follow this journey at  Mind Over Meniere’s . The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.