Patient Perspective

Family Support Network

Article Summary

The friends and family members who are caregivers for vestibular patients provide essential support. One of the best things you can do as a caregiver or friend is to be patient and accept that, even if you don’t understand what your loved one is going through, their symptoms and feelings are real.

Caregivers Need Help Too

The friends and family members who are caregivers for vestibular patients provide essential support. Without firsthand experience, these individuals are challenged to learn about vestibular disorders in order to lessen the impacts of their loved one's illness. VeDA seeks to focus attention on this important part of our vestibular community and to support their efforts.

Understanding What Your Loved One Is Going Through

Vestibular disorders can be difficult to understand if you are not the one experiencing the confusing and often debilitating symptoms. A vestibular patient may look normal to the observer, but their brain is on overload processing the conflicting information it is receiving from the eyes, inner ear, and body. In addition to the typical symptoms of a vestibular disorder—dizziness, nausea, imbalance, vertigo, tinnitus, and migraine, just to mention a few—many vestibular patients have a difficult time concentrating, some experience anxiety from not knowing when their next vertigo attack will occur, and most deal with some form of depression due to the loss of their independence and other factors. Vestibular patients have shared their experiences with us to help you understand what they are going through, and give you some tips on how you can help them.

Be Patient

One of the best things you can do as a caregiver or friend is to be patient and accept that, even if you don't understand what your loved one is going through, their symptoms and feelings are real. There are many things a vestibular patient can no longer do, which directly impacts their friends and family. You will be best able to support your loved one if you learn about their condition and listen to them when they explain how they are feeling and what they need to manage their symptoms.


Anxiety for Caregivers - Is It Normal?

Vestibular disorders have real, physical symptoms that often cause patients to behave anxiously, which can be worrisome for their loved ones, especially when that behavior is different than the patient’s “pre-vestibular disorder” behavior. Sometimes it is useful to determine if worrying has become excessive to the point that it can be defined by a clinically diagnosable mental health condition so the patient can be encouraged to seek help. It is important to remember that labeling the patient’s condition is not intended as a judgement. Whether or not a vestibular patient or their loved one receives a mental health diagnosis, they can still benefit from professional counseling to help them cope with the intense and understandable changes these conditions impose on their lives.

A Patient's Message to Caregivers

VeDA Ambassador and vestibular patient, Glenn Schweitzer - author of the "Mind Over Meniere's" blog - wrote an article to help caregivers understand how they can support a loved one with an invisible illness.

Take Care Of Yourself

If you've ever been on an airplane, you've heard the flight attendants remind you to put your own oxygen mask on before helping others. This message is an important metaphor for caregivers - take care of yourself so that you can be present to fully support your loved one. Are you getting enough rest? Do you go out and do fun things just for yourself, even if your loved one can't participate? Are you eating right, exercising, and taking care of your own physical and mental health?

What are the issues that most affect caregivers?

As a first step in defining caregiver issues and needs, VeDA conducted a survey in which we asked patients and caregivers:

  1. How has your vestibular disorder impacted your family and friends?
  2. What impacts or limits of yours have made their lives more challenging?
  3. What do you notice is upsetting, irritating, or disappointing to them?
  4. What do they identify as the most difficult part of dealing with your condition?

Learn More About Vestibular Disorders

VeDA has many educational resources on our website that can help you learn about the physical, mental and emotional challenges faced by vestibular patients. To be an effective advocate for your loved one's healthcare, it is helpful to understand how vestibular disorders are diagnosed and treated, and how they impact everything from balance to hearing, vision, and stamina.

Management Tool

Oftentimes, once a vestibular patient reaches their "limit" they are unable to communicate what is happening to them. It's best to be prepared to avoid pushing the patient beyond his or her limit, as well as knowing how to deal with a crisis situation should it occur. Communicating in advance about a patient's triggers and treatments can give both of you peace of mind, which in turn can help you enjoy life despite the challenges of having, or living with someone who has, a vestibular disorder.

Planning Tool

Sometimes everyday tasks and events become burdensome to vestibular patients, and by extension to their loved ones. Going to the grocery store is more than just a chore, it's a CHORE, and attending social events can really wipe you out. By communicating in advance about what a patient's needs are, and planning out how to approach these situations, you lessen the anxiety that can be caused by not knowing what's going to happen. Using this planning tool will allow you to react constructively if and when the patient is experiencing symptoms and needs your help.

For Patients

Being a vestibular patient is hard. Your life has been turned upside down, and you may feel like no one understands. It is often helpful to remember that your family and friends' lives have changed, too, and they are learning to cope with these changes as best they can. Be patient with them. Give them space to do things that are important to them even if doesn't include you. And remember, if sometimes they express frustration, know that they still care for you and are doing their best, despite the challenges you both face. You can help them by sharing the resources on this page, and by discussing them together.