It’s the most wonderful time of the year but not necessarily for people with vestibular health issues!  December means holiday food, family traditions and getting together with people who share our DNA, but may not know anything about our current life or daily circumstances.

For many people, holidays can be a wonderful experience of listening to the giggles of young children and the light-hearted enjoyment of just “being together.”

But I have noticed that for myself and for my patients with Vestibular Health issues, time with extended family or family we have not kept in close touch with can be exhausting and frustrating – often leaving us feeling further isolated. Our daily experience of suffering can feel disregarded.

Family that we do not talk to very often only knows the person that we used to be, or historically have been. Once they hear the “stories” about what we have experienced or are currently dealing with, they can innocently make invalidating comments, such as “You never used to be like this before. I wonder what happened.” 

 

I have found that I have to make a choice.

 

Do I spend the limited time that I have trying to explain the extent of my symptoms and the daily challenges I face trying to live a normal, active life with Vestibular health issues?

Do I mention the high costs of specialized health care that I require and the lack of available resources I have encountered in trying to learn how to manage my Vestibular symptoms?

Do I complain about the fact that none of my current team of specialized healthcare providers accept health insurance and those providers that do take my insurance do not even spend enough time with me to hear my whole story or begin to help me feel better, but instead herd me through their office like cattle?

Do I discuss the impact that my Vestibular Health issues have on my work, my intimate relationships, my finances, my mental health, my ability to exercise, read or drive?

Or in contrast, do I focus my sharing primarily on the more desirable aspects of my life – the things I perceive as successes – and minimize sharing my daily difficulties living with the conditions that are causing me great discomfort?

 

Or do I just smile, enjoy myself, cultivate gratitude for the beautiful moment with my loved ones and listen to others sharing?

 

After living with Vestibular Health issues for over 30 years now, I have decided that the best way I can “be me” is to breathe, smile and minimize my sharing the details of my Vestibular Health issues at large gatherings with extended family and friends.

That way, I can avoid the “poor me” dynamic.

 

My time with my loved ones is too limited to possibly explain the depth of my situation anyways. I have a team of healthcare providers who know the whole story, a dedicated caregiver, and a support group. Those are the most important people who “need to know.”

 

Many years of personal health struggles, and my fierce dedication to learn what is happening with me and how to deal with it have resulted in a spiritual shift for me. 

 

I now use the Prayer of St. Francis as an anchor in my life, and it carries me through the times with my family, friends or others when I don’t feel very well understood or validated.

My suggestion to you is not to get too frustrated or decide that your family has disregarded your experience, but instead to make sure you have a competent team of healthcare providers and a close support system who do understand exactly what you are going through. Those are the people who need to know all the details of your case and day-to-day experiences.

 

The Prayer of St. Francis empowers me to shift my focus from myself onto others, and to be less self-absorbed.

 

This prayer has been beautiful to my ears ever since the first time I heard it during my Catholic upbringing. Until about four years ago, I didn’t really understand it’s true meaning.

I hope you enjoy it and feel empowered to be with others joyfully who do not fully understand you or what you are going through. 

Perhaps you can make a shift to a mental space where you don’t need them to know?

 

Prayer Of St. Francis

Lord, make me an instrument of Your peace. 

Where there is hatred, let me sow love; 

Where there is injury, pardon; 

Where there is doubt, faith; 

Where there is despair, hope; 

Where there is darkness, light; 

Where there is sadness, joy.

O, Divine Master, grant that I may not so much seek to be consoled as to console; 

To be understood as to understand; 

To be loved as to love.

For it is in giving that we receive; 

It is in pardoning that we are pardoned; 

It is in dying that we are born again to eternal life.