Rebuilding the Self - A Patient Perspective

Meniere’s Disease attacks two areas of the self: the physical body with dizziness, ringing ears, fullness in the head and hearing loss and the sense of self that we construct inside ourselves; our thinking self, our spirit and our self-esteem. 

Doctors do the best they can with medication and surgery to help heal or stabilize the physical symptoms of Meniere’s, but often do little to help rebuild the inner-self.  I have learned that I can help myself and trust others to reach out and help me.

I believe that regaining wholeness for people who have Meniere’s Disease depends on several basic assumptions.   You must set healing goals for yourself and believe that you can be better in the months and years to come than you are now.  You know there will be difficult days but it is important to concentrate on the good days or parts of days and not get caught in an emotional loop of despair and depression.  You must stay as active as possible and have things that you look forward to doing each day, each week, and on the horizon.  If the only thing you can do that day is walk to the door, then walk to the door and sit outside and look at the stars at night or nature during the day.  Develop a stretching or exercise routine that helps you retain flexibility and core strength.  Do that routine each morning or evening at whatever level you are able to achieve that day.

I have identified nine personal ideas that helped me rebuild my self-concept as more than a person defined by dizziness, hearing loss, and ringing ears. I have had Meniere’s for 18 years and have had dizziness since I was a young child.  Not knowing anything different, I thought dizziness was a part of everyone’s life and I just had to try harder when I got dizzy in physical activity or sports. I have broken my arm falling down dizzy.  I have fallen down many times riding bike and have been found by other bikers and highway patrol too dizzy to get home.  I have driven my car off the road more than once and other people sometimes drive me because of dizziness.  Generally I spend portions of 1 to 2 days each week in bed, unable to function safely.  But I am mentally healthier now than I have been for many years by taking control and rebuilding my sense of self.  These are the ideas that have helped me.  Try what seems possible, but do not do what you cannot do safely.  Check with your doctor as these ideas describe a personal journey and are not advice from a medical professional:

  1. Don’t obsess on the gory details of Meniere’s attacks when talking to others.  Speak the truth, but minimize the details so that health, not sickness becomes what you share.  Simply say, “I am having a dizzy day,” or “I have loud ringing in my ears right now,” and leave it at that.  Stay off chat rooms and away from people that concentrate on the difficulties and drag you down.
  2. View yourself as a person whose health is more powerful than the disease.  Cross over the internal-mental hump of defining yourself by the name of the disease and define yourself by your wholeness.
  3. Develop mantras (repeated phrases) of wholeness and self-esteem.  Find the words that work for you.  For me, these include phrases like: I am not a fragile person – I am a stronger than the disease   I am a child of the universe and have a right to happiness and health I have a right to an interesting day and a good night of sleep
  4. Guard relationships: this is a fertile ground for misunderstanding because co-workers, spouses, partners, friends and family get tired of hearing about the difficulties.  Conflict can increase beneath the surface and erupt with damaging results. 
  5. Explore the concept and reality of illness in the organization of your internal world.  What is your narrative about illness and pain?  It is probably complex, but I have found that my sense of illness wanders into dependence, anger, sympathy from others, and childhood experiences. 
  6. Seek out one or two or three friends who can both listen to you and steer you back to health.  This is difficult because you are trusting another person to be sensitive, but help you place limits on self-pity and help you rebuild a healthy sense of self; emotional and cognitive.
  7. Review with your physician or psychiatrist (any doctor who prescribed your medications) the medications you are taking.   This includes the number of medications you take, length of time you have been on the meds, dosages, timing for taking the meds, possible interactions between drugs, and the paradoxical effects of the drug.  If you have prescriptions from more than one doctor consider getting all prescriptions from one doctor so effectiveness and interactions can be more closely monitored.  Don’t doctor shop and get meds from each doctor.  Never discontinue a medication or experiment with dosage without a talking about it with your doctor. 
  8. Develop a relationship with a mental health professional who allows you to call, email, or schedule a visit on short notice.  This relationship of trust allows you to share short-term difficulties and long-term healing goals with someone who has mental health expertise and is more detached than your immediate family or friends.  Meniere’s Disease is often accompanied by dark moods, loss of hope, and depression and we need to seek help from those who are trained to help.
  9. Accept the disease.  This may seem contradictory – but I have found that it is more helpful to accept the disease than fight it or deny it.  That means when I am dizzy, I acknowledge it and go to bed and sleep.  I don’t try to be heroic and do things I shouldn’t be doing because I might injure myself or injure others.  If I am having a Meniere’s attack, I tell myself I am having a dizzy hour, or a dizzy day but I will not be dizzy forever.  This is tough for me because in the midst of a dizzy attack it is still difficult to remember what it feels like not to be dizzy and to sustain hope and know this will not last.

Meniere’s Disease is a difficult disease because it cannot be seen and others cannot easily identify with the overwhelming attack on our physical, mental, emotional, and spiritual well-being.  We can help ourselves and we can help others who have the disease by being gentle and reaching out with hope.

Author & Meniere's patient: Jim Hainlen