Accepting Your Vestibular Diagnosis

Receiving a new diagnosis, one that you understand you have to live with forever, is jarring news; news that you likely never thought you were going to get. Accepting that you are now living with a chronic illness is not something easy to do.

As you probably know by now, I treat vestibular disorders but I do not have a vestibular disorder. However, I do want you to know that I write this post from a place of learning acceptance as well. Although I am not dizzy, I do have a chronic illness, Hashimoto’s Disease. It is a fairly common condition that affects your thyroid gland, and, similarly to Vestibular Migraine, affects 1-2% of the population annually. Learning to cope with a chronic illness is a process – it is not one that happens overnight, sometimes it can take years.

For instance, it can be really difficult to distinguish between life fatigue and fatigue that happens because of your diagnosis. It can be hard to learn your food triggers, because it may be something you’ve been eating your entire life and haven’t thought twice about it. And, largely, it can be hard to make a change when you’re so used to living with something that may have been left untreated for a long time. Accepting that you have a diagnosis is the first step in many senses, especially when it comes to living with a vestibular disorder.

Receiving an Accurate Vestibular Diagnosis

Vestibular specialists are hard to come by and when you finally find one, it’s likely that you have seen many other practitioners beforehand that have told you that you’re ‘totally normal’ or that ‘it’s all anxiety.’ The most common vestibular diagnoses are Benign Paroxysmal Positional Vertigo, Vestibular Neuritis, Vestibular Migraine, and Meniere’s Disease. There are many others, but they’re much less common.

Remember that vertigo is not a diagnosis, it’s a symptom. So, if you’re receiving the diagnosis of vertigo from your provider, either ask for another diagnosis or find a different provider.

When you receive a diagnosis, read up on it to make sure you fit the profile. For example, if you receive the diagnosis of BPPV, but your vertigo isn’t positional, try to seek another diagnosis. If your diagnosis does seem like you, congratulations on finding out the WHY of it all, even though it means you have to now deal with this new thing, it does not define you and it means you can start working to manage your symptoms.

Pink lettering with a black border reading "your diagnosis does not define you"

Learning about your diagnosis

Every vestibular disorder is different. There are different symptoms, protocols, dietary needs, and lifestyle changes that are required for each one. Luckily, there has never been more research on vestibular disorders and their needs than there is right now. A great starting point for learning about your diagnosis is right here on this website. Under the “Dizziness” tab you can find the name of most vestibular diagnoses and definitions, treatments, and more. Before you make any changes, it’s best to learn what will actually help.

Because no two people are the same, it may be ineffective to ask others who have the same diagnosis and copy them exactly. Some people may be gluten sensitivity, while others are not. It’s important to keep in mind that your vestibular diagnosis is your own and that although others may be similar, no one else has the same treatment plan as you do.

How to Best Use Support Groups

Support groups can be the best and the worst tool at the same time. It’s vital to find community, relate to others, and ask for advice from others who know, and for that, I absolutely love a good support group. However, spending too much time in a support group, especially one where things may not be too positive, can be really frustrating. Know when you need to take a step back from the group if it feels like it’s becoming overwhelming or negatively affecting your psyche. You are more than your diagnosis, and although it’s important for you to have a community around you, it’s equally important that you are able to focus on non-vestibular aspects of your life.

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Asking for Help (& Accepting It!)

You are not a burden on anyone. When you receive a diagnosis, your mind, body, and soul will go through many changes. You may not be able to do as much as you were able to, and accepting that new reality, having to do less throughout your day, and you may need to ask for help. As humans, we want to be as independent as well can, and do everything by ourselves – that starts when we are about 2 years old and never really stops. Asking for someone else to go out of their way to do you a favor, or to take on more than their normal load can be difficult. However, I’d like you to think of this backward.

If your best friend, neighbor, partner, child, or family member got sick or was going through something new and difficult, what would your initial thought be? Take a second and think about that.

I’m willing to bet the first thought that came to your mind was that you would want to help, right?

As much as we want to be independent, we also want to help. We are not as individual as we want to believe that we are. The “it takes a village” mentality is very real, and even when it’s hardest to admit, we do need help and people LOVE to help. If you find that by the end of the day you’re absolutely exhausted, you cannot manage to do anymore, but you still need to make dinner, ask for help then – but only the first time. I say this not because you shouldn’t ask for help making dinner, but because you should ask for help before you think you need the assistance.

We cannot give from an empty glass. You get one full glass a day, and prior to chronic illness, it’s likely that your cup was much bigger than it is now. Everything can take from your cup, doing laundry, walking the dog, getting your kids ready for school, brushing your teeth, eating, working out, and more. Every single thing you do takes energy. What things can you ask for help with? Can someone else walk the dog and make breakfast? Can you meal prep one meal so it makes it easier for you during the day?

Try making a list of all the little things you do throughout the day. Eating, cooking, laundry, dishes, and other small tasks – ask for help with those throughout the day so you’re able to make it to bedtime. Quit while you’re ahead, and your body will thank you for it later.

When you have a new diagnosis, managing the news, your new routine and your body’s needs might be enough to run your cup out of energy, however, there are ways to create a bigger cup, over time.

  • Taking help, especially at first, with any task that seems daunting.
  • Prioritizing movement – exercise can, over time, increase the size of your cup through strengthening and cardio.
  • Find triggers for you – food, weather, stress, and hormones are big ones to be careful of

Remember, other people like to help. Good friends want to be there for you. Your partner can pick up some extra slack.

Setting Boundaries

It seems like the last few years everyone has really started to talk about boundaries, what they are, why they’re important, and how to ask for one. And, whoever these people are who created this term, are right – boundaries are really important. They’re important with family, romantic relationships, friendships, pets, and with yourself. A boundary is a limit that you set for yourself within a relationship. A person who has healthy boundaries is able to delve into intimate relationships and new experiences when they want to but also knows themselves well enough to set a limit for when they want to say no.

I want you to consider your own boundaries. Do you have them within your friendships or with family members? Do you have boundaries set when it comes to experiences, like you would never go skydiving? Are you able to open yourself up to others to ask for help when you need it? Do other people in your life have healthy boundaries? If you are sure you have healthy boundaries, that’s great! You are able to say no to a friend or family member if they ask you to go to a crowded gala where you are not comfortable, for example.

However, if you find yourself thinking that you may not have boundaries for yourself, try and think of a few that may help you. These do not have to be perfect or concrete the first time. These can fluctuate over time, and that is okay and normal. Start small, and try to be consistent. Boundaries can become habitual if they are repeated many times.

For more information on setting better boundaries, read this article. 

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Changing What You Can Control

When you ask for help and set a few boundaries, you have made an active change – that is excellent. You can only control yourself. Your actions, your emotions, your choices. It’s important to remember this because other people may be at the source of your symptoms, but you can choose who to be around, within reason. Choose yourself first.

If you notice that really big box stores are a trigger for your symptoms, you know you cannot control the fluorescent lighting and tall aisles. However, you can choose to wear a hat, Migraine Shields, and earplugs. You can also ask if someone else can go to the store for you, or use a store’s storefront pick-up or delivery options. Small changes in these actions will both use less of your cup and simultaneously relieve the stress of another errand that may make you increasingly symptomatic.

Focus on what you can do, instead of what you cannot control.

Although you cannot be in control of others, you can control you. If large crowded areas where people are darting across one another are problematic, avoid the mall during peak hours. Talk to your family about screaming and yelling in the house – little kids may seem like they don’t understand, but they do listen, and most of them want to be treated like an adult. Talk to them individually, or as a family, and share with them what’s going on with you, and why their parent needs a little extra help or quiet time sometimes.

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Accepting What is Out of Your Control

Not everything is in your control, we learn this from a young age. As much as we may enjoy micromanaging and trying to get everyone on our page, it’s just impossible. There is always going to be crazy carpet at hotels and in airports, airplanes are going to his turbulence, and the car in front of you may unexpectedly slam on their breaks. All of these may be triggers for you. Remember to stay calm, and breathe through the moment. Moments like these are always going to happen, and stressing out about what might make you dizzy or otherwise symptomatic will bring on your symptoms more than the event itself. Being stressed out can cause dizziness, and increasing that anxiety can only make things worse.

Here are a few tips to help you get through moments of chaos

  • Take a step outside. You do not need to be present in these moments, people understand that you may need to leave. And if you do not feel comfortable explaining, excuse yourself to the restroom.
  • Practice grounding standing up. Root your feet into the floor, breathe in through your nose, hold, breathe out, hold. Each should be for 4 seconds, for a total of 16 seconds per breath.
  • Block time on your work calendar throughout the day, 15-30 minutes, to take time for yourself if needed.
  • Take a walk alone, or with a friend, to clear your head.

 

 

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