Coping With Meniere’s Disease as a Family
My Mother, Karin Henderson, usually writes the content for the website and I am usually in the background working on the website and sometimes answering the phone and trying to answer some of your Meniere’s disease questions. One thing I keep hearing over and over is that family and friends do not understand, or even believe what some of you are dealing with.
This is a question that I have no problem answering. As a family member, I saw how people reacted to how my father used to act when he was really suffering from his symptoms or when he was going through an attack in public.
I was with him in a store one afternoon and the fluorescent lights triggered an attack. My father went from walking around fairly normally to having a vertigo attack in less than a minute. I heard people asking each other why someone would be that drunk in the middle of the afternoon.
My father had to use the store shelving to hold himself up while I went to go find him a chair so he could sit down until the vertigo attack passed. Even that was a very infuriating situation because when the store employee saw my father, he also thought my father was drunk and not dealing with a medical condition. It took some explaining before the employee got us a chair.
On more than one occasion in the past, I watched my father crawl through the house during the day, pushing a garbage pail in front of him in case he threw up on the way to bed because he was having another attack and he could barely crawl. Walking was impossible for him when he was having one of his attacks.
As his son, I wanted to help him, but as my father, he was too embarrassed to ask for, or take any help, from me. He was not being mean or rude, he was just very scared and alone and he could not explain or understand what was happening to him. Unfortunately this leads to some very strong feelings of guilt and anger for everyone.
If you have Meniere’s disease, it is almost impossible to explain what you are suffering through.
None of it makes any sense. As a family member, it is impossible to understand what the person with Meniere’s disease is trying to cope with and even more damaging to the relationship, is why they do not want to accept any help. I can only guess at why my father refused any help and that would be because nobody was taking him seriously when he first started to get his symptoms.
As a family, we unfortunately grew used to how he was moving around and coping with his symptoms and attacks. To us, it was as if he was able to cope but what we did not realize is that he was struggling every moment and he was too exhausted to be able to explain what was happening.
Emotionally pushing people away was easier than talking about what he was suffering with. He really just wanted to be left alone and we just wanted to help him. Not a situation that allows for good communication or even good feelings towards each other.
One afternoon, I was downstairs working at my parents’ house and my father was upstairs making something for lunch. I heard a huge thud and I knew right away that my father had just had a drop attack. I knew that he had recently had a drop attack while he was driving, but I never really thought about it until I saw him lying on the kitchen floor bleeding from where his head had hit the counter.
I managed to help my father to his feet and we got to the bathroom where I was able to get the bleeding stopped. I wanted to take him to the hospital, but there was no way that he would do that. I was very concerned about the cut to his head, but the more I talked to him about the hospital, the angrier he got.
What I did not realize at the time was that every time he had gone to the hospital in the past when he had a very bad attack, they just kept him sitting there, waiting. When he did finally see a doctor, they would give him something like Gravol and send him home. The impression that he had was that he was kept waiting because the hospital staff thought that he had been drinking and more serious injuries had to come first.
Another time my father was cutting the grass when he either had an attack of vertigo, or became very dizzy, and he had to lie down on the lawn until it passed. Our neighbor saw him lying down and called us to let us know that David was in trouble. When I got to him, the attack had passed and he was trying to get to his feet.
I helped him up, but then he mumbled thanks and gently pushed me away and walked inside the house and went to bed. I was still not fully understanding what my father was trying to deal with and I was a little hurt and confused that I had been pushed away. He was polite about it, but it still hurt.
My father had been dealing with this for several years before he was finally diagnosed with Meniere’s disease and in all that time I had been working closely with him in our store. I never really saw what he was experiencing. He was either very good at hiding it, or he was very good at anticipating the Meniere’s disease symptoms and compensating for the attacks.
Because he was so quiet about what he was dealing with, I never fully understood the torment that he was going through and I never really thought that things were as bad as they were. It was only when I started to see for myself that his condition getting worse that I began to understand.
Once I saw the results of the symptoms, the drop attacks, the crawling through the house, the unexplained anger and bitterness, I really understood what was happening. I then really started to watch my father and people around him and how they reacted to his condition and symptoms.
I have heard many people tell me that they are being told that there is no way that they could be as sick as they are because they do not display any symptoms and nobody could have that much wrong with them and not show it.
Well, from first hand experience, yes you really can be that sick from Meniere’s disease and not show many outward symptoms. I saw that with my own father once I started to pay attention.
One of the strange contradictions about Meniere’s disease is that some of the symptoms and attacks may be brought on by stress. For a lot of people, this is difficult to understand because we are told that to reduce stress, do something else. Get away from the cause of your stress and you will be better.
But if you suffer from Meniere’s disease, you cannot get away from stress because the source of your stress is internal, not external. There is nothing that you can do to get away from the stress of not knowing when the next drop attack or attack of vertigo will hit you. This lives with you every single day and being told that everything will be OK if you just relax may actually cause more stress.
The advice may be given with the best intentions and in the kindest way possible, but it is being given by someone that does not live with Meniere’s disease. They cannot possibly understand that you cannot escape, this is inside and completely unpredictable. There is no way to get away from this, it is always there.
And this is the contradiction that most people do not understand. Telling a person to relax, get away from the stress can actually create the stress that can trigger your symptoms and may bring on an attack. Just off the top of my head, going to a movie involves:
- Driving – how am I feeling right now and can I even drive?
- Parking
- Lineups
- Getting something to eat – is there anything I can eat that will not trigger an attack?
- Finding a seat in a dark theatre while I am unsteady on my feet even in daylight.
- And the big one – wondering if the flickering of the screen will trigger an attack
You have not even left for the theatre and you have already created some serious internal stress just wondering if you can even get through a movie and this may actually trigger a Meniere’s disease attack right at home.
This was the life my father had to live and I was barely aware of any of what he was going through. It was no wonder that simple things could make him angry and how even simple acts of kindness made him very distant. He was only trying to protect himself and those he cared about and being distant and keeping things inside was the only way he could do that for everyone.
David’s symptoms have not been a problem for him for many years now, ever since he found two doctors that understood what he was going through. He has been able to lead a pretty normal life and one that is considerably better than the one he was living many years ago.
- If you would like a copy of our Meniere’s Disease Study Guide, please click here. This guide is a step by step journey exploring your symptoms and what may be causing them.
- If you would like more information on the system that David, and numerous others, have used, please click here; What Finally Worked.
- If you have any health questions or concerns, please feel free to Contact Us and we will be happy to share our knowledge and ideas with you.
Karin Henderson, Retired Nurse
(604) 463-8666 – Pacific Standard Time