Remember that with a combination of lifestyle changes, medication, and various treatment options, your loved one can still lead a rich and fulfilling life. Stay positive, and remember you are not alone in dealing with this. When you have Meniere’s Disease family support can make a big difference. I’ve found there are five important ways to support a loved one with Meniere’s Disease.
Try to learn about and understand Meniere’s Disease and its symptoms. When starting your Meniere’s Disease family support journey, there is a lot of information to take in, and it will help them if you have some understanding of their condition and what to expect without asking them a million questions. If you can, ask the diagnosing consultant and other relevant medical professionals. Write a list of questions before appointments if you are going together.
Be aware that there is a lot of information on the internet – there is some conflicting information and some information isn’t true. Stick with trustworthy sources and registered associations such as The Meniere’s Society for factual information. Be wary of anything that promises to ‘cure’ Meniere’s – there is no known cure.
You may find reading about other peoples’ experiences helpful. There are lots of forums such as at Menieres.org or a Reddit thread about Meniere’s Disease where you can access support and ask people questions.
Hearing loss comes with Meniere’s Disease, so it will help to learn about this as well.
Find out what they are experiencing. Meniere’s is different for everyone. There are physical symptoms and emotional effects. It is completely normal to feel a whole spectrum of emotions, and these will change over time. There is no right or wrong way to process this diagnosis. Letting your loved one know that what they are feeling is ok and that you are there for them is hugely beneficial. They might not want to talk about it right away, but let them know they can come to you when they are ready.
Try to be non-judgemental and listen to them. It can be painful to hear when someone you love is in pain, but they need to be heard. It is likely that they have had a number of people, including medical professionals, not believe them. You can be someone who validates their experience. Simply saying, “I hear you and I believe you” is incredibly powerful.
It can be tempting to try to offer advice, “fix” the problem, or empathize with them by telling them about times you’ve been sick, but it is more helpful for you to listen to them and offer your support.
Even with the most loving and supportive friends and family in the world, it is normal and healthy for your friend to seek professional psychological support. Your family doctor should be able to point you to local services, and charities such as Action on Hearing Loss offer some services. There are even therapy apps that you can use from home like TalkSpace and Betterhelp.
Ask them how it’s going. Be prepared to listen to them. Having an invisible illness can be frustrating because people tend to forget it’s there, but the person affected is dealing with it all the time. Personally, I’ve found it a huge relief when a friend asks something along the line of “how are the ears today?” and I can tell them honestly.
How often you do this is something that will definitely vary from person to person and is likely to change over time. Take their lead, and if they are uncomfortable talking about it, don’t make them.
It’s a good idea to check if they experience attacks of vertigo, and how they would like to be supported during those times. They might find it comforting to have you with them. Other people want to be left alone. Either way is perfectly fine, as long as they are physically safe.
Words and actions of encouragement go far! It can make the difference between having the strength to face the day and not.
This can take the form of words: “I believe in you” or “you’re strong and I’m proud of you.” If they are having a bad day, it might help them to be gently reminded that because Meniere’s changes day-to-day, there will always be a better day.
You can also take action together. Starting a healthy activity, like yoga or walking, or trying out low-sodium recipes together.
Picking up their medication from the pharmacy is another way to take action and show you care.
Bear in mind, most people with Meniere’s have to make big lifestyle changes. There are plenty of opportunities to give them your support and encouragement in different ways.
Due to Meniere’s disease flaring up at any random time, it means a lot to have a loved one who is patient, flexible and understanding if plans are canceled at the last minute. Meniere’s symptoms can be unpredictable and it takes time to recover. They need to keep a close eye on their stress levels because stress can cause attacks. Bear in mind that the sources of their stress might not be obvious to you, so it might seem strange if they have to leave a situation.
For example, in my case, certain kinds of lighting can provoke attacks. I can go from being completely fine one minute to getting stressed out a minute later. The same thing happens when the level of noise in a room is too loud, or if there are a lot of tinny sounds.
When someone gets to know their disease and triggers they may be able to feel when an attack is coming on in advance and have to change plans just in case it develops. I have found that downsizing the plan to something safer in case they get sick can be helpful. For example, deciding to watch a film instead of going on a hike. If they would rather not, let them know that is ok and you still want to do things together in the future when they are better. This can be frustrating but it is necessary to keep them safe. Try not to take it personally, and don’t give up on them!
You can build a stronger relationship through this experience with patience, understanding, and compassion. There may be tough times but know that family support can make a huge difference to their life.