Asking for Support and Understanding

I've recently heard from someone who is feeling alone and scared in their struggle with Meniere's.  Having an invisible illness can be very hard not only on us, but also our friends and family since it can be hard to feel compassion for something you cannot see or relate to.  Here's a letter that might help.

Dear Friends and Family,

I'm feeling scared, alone, and overwhelmed right now.  I've probably told you that I have Meniere's disease, but I understand most people don't know what that is or how it affects me.  If I haven't explained it well to you yet, I'm sorry.  I'm still figuring out how it affects me, too.  Some days are better than others.  Some are really, really bad.  I know it's hard for you to understand me right now.  I don't understand myself what is happening to me.  My body and my life are out of my control right now and I need as much support as I can get.

I know I'm not myself.  I might seem self-centered and needy right now.  And I am.  My body is out of my control which has made everything about my life unpredictable and scary.  I want to do all the things I used to do, but there are many reasons why I can't or am afraid to do them.  I am trying very hard to learn how to cope with all of this, but it takes time and I'm not feeling very patient with any of it.

For one thing, I cannot hear well anymore.  My ear or ears ring constantly and loudly.  Being in places where there is a lot of background noise are difficult and sometimes even physically painful. Even in a quiet environment,  I may not understand what you're saying if you don't speak clearly and are not facing me.  I'm sorry.  I know it's frustrating for you, but it is even more frustrating to me.  I hate having to ask you to repeat yourself.  But do know that I DO want to hear what you have to say, even if you don't feel it's something important enough to repeat.  And trying to hear and follow a conversation with more than one person or in a public place is even harder.  It's like watching TV with the sound muffled.  This all makes me feel isolated and alone.

I also feel dizzy or disoriented a lot of the time.  This requires that I use my full attention to walk or navigate myself through space.  Imagine having to will yourself to literally put one foot in front of the other to walk.  And keeping my balance to stay upright is like walking above the ground on a tightrope.  It takes all of my attention and effort, which doesn't leave much left for thinking about anything else.  It is similar to what you might feel after getting off a boat or ride at the fair, but it is constant and doesn't go away.  Some days are better than others.

At it's worst, I have vertigo.  I might only get it a few times a month or year, or I might have it several times a week, for 4 to 12 hours or longer.  Afterward, I feel very shaky and tired, sometimes for days.  This is hard to explain to someone who has never had vertigo, but the best explanation I can use is that it feels like being on a fair ride that is some combination of the teacups and a roller coaster with many loops.  And it goes on for hours without a break.  Often I cannot tell up from down, even crawling across the floor can be physically impossible.  Walking might be completely out of the question - my brain cannot sense where my body is in space.  Or, another way to imagine how vertigo feels, is it's like a very, very bad hangover: the spinning, the nausea, even diarrhea and vomiting to the point of dry heaving over and over.  And there is no medication that stops it.  The only things that might sometimes take the edge off the misery are drugs like Valium, which happens to suppress the vestibular system, and anti-nausea medicines, like Zofran.  But these do not stop a vertigo attack, they only might help minimize the severity of the symptoms.

Finally, I get severe brain fog or cognitive impairment.    This is beyond my control.  I hate it and wish I could get rid of it.  It impacts my short-term memory and my ability to think clearly.  You may have to tell me things more than once.  Heck, even I have to tell myself things more than once.  I might walk into a room or even be mid-task and forget what I'm doing.  It is very hard to make even the simplest of decisions.  If you ask me what I want to eat, I may not be able to tell you.  It is hard to watch a movie, follow the plot of a book (if my eyes are even able to stay still enough to read - I often have nystagmus, or darting of the eyes), or follow a conversation.

You might think I'm "just" depressed.  Yes, I am depressed because I can no longer live the life I used to live or feel hopeful about the future life I had hoped for myself.  But it is not the cause of Meniere's disease.  To help myself, I will, if I haven't already, seek out professional counseling and, if needed, take medication.  But what would really help me is just knowing I have people who will listen to me and let me feel all the grief I am feeling. 

Yes, I am grieving.  I have lost much of my independence, maybe even my career, and my identity.  Because of this, I am going through the stages of grief - and if you are close to me, you might be experiencing some of them, too.  But it is normal to have these feelings in this situation.  They are denial/isolation, anger, bargaining, depression, and acceptance.  I have to go through these and I might bounce from one to the other and back again.  I promise to do what I can to help myself, but be please be patient with me while I go through this.  I need someone who will listen and accept me as I am.  Even though I am going through all of these things, I promise to still be the best _______ I can be in return to you.  I am still me, after all.

Finally, I know I seem anxious to you.  Well, I am!!  My life has become very unpredictable and it's scary.  I do still very much want to make plans with you, to work, travel, and do all the little and big things I used to do.  But I never know when I might get vertigo.  Once vertigo hits me, I may not be able to walk.  I certainly cannot drive or get myself out of a public place alone.  If I am in a public place, this can be very, very scary and embarrassing.  People might think I'm drunk or having a stroke or some other medical emergency.  But what I need in these situations is someone to help me get to a safe place.  I might vomit or need to use the bathroom urgently.  I might have some medications I need to take to calm the attack or reduce the nausea I feel.  During these attacks, my body is out of my control and I really just need someone to talk to me and reassure me that I can get through this.  I need to stay calm, breath, and know I'm not alone.  

I want and need you all to know that I am doing the best I know how to do.  I don't always know how to do this.  Even the best Meniere's doctors don't know what causes this disease or how to treat it.  There are things we can keep trying to get my symptoms under better control and I will keep seeking help from them, but please understand that there are no easy answers.  There are probably few diet or lifestyle changes I haven't already tried by now, believe me when I say I've done my research and have tried everything.  Unfortunately, there are no easy answers for many of us with Meniere's disease.

Thank you for listening.  I will continue to keep the lines of communication open and do my very best to still be a good friend/daughter/mother/son/father/spouse to you.  I will try to help you understand how I am feeling.  I don't want to be burden, I just hope I can count on you to help me as I figure out what my new normal is.