How Can I Share How I Feel When I CAN'T FIND THE WORDS!

Imagine living with a chronic illness that provides you with a daily experience of your body and of your life that people around you do not understand. It can become very frustrating and very lonely as one persistently tries to explain to others what it is like to live with his or her given illness. At times it is easier to give up because of the exhaustion following continuous repetition and disappointment with others. Imagine how much more isolating it would be to live with chronic illness and to not be physically able to find the words to even try to share your experience with others. This can be isolating, frightening, and definitely challenging.

Many people who live with chronic physical illnesses experience a variety of cognitive difficulties, ranging from mild but frustrating to serious and impairing. Sometimes these cognitive changes include problems with language. For example, illnesses such as Alzheimer's Disease, other forms of Dementia, certain Traumatic Brain Injuries, and Parkinson's Disease can often be accompanied by various forms of Aphasia. Aphasia is a broad term referring to difficulty producing speech, and can include the leaving out of important words in sentences, the inability to speak fluidly, or sometimes creating sentences that are nonsensical, among other things. Sometimes Anomia is also present, meaning that a person cannot name an item that he or she sees. Other illnesses, including Multiple Sclerosis and Lupus can lead to a less severe form of Aphasia called Dysphasia. Dysphasia refers to when a person has a hard time retrieving words when speaking and gets "stuck" trying to recall a word that is otherwise frequently used. People suffering from Dysphasia also commonly begin to make frequent spelling errors, which they did not do so before the onset of their illness. Regardless of the obvious functional difficulties that these cognitive impairments create in one's life, they also can follow with a psychological experience of isolation.

People living with certain chronic illnesses may have a difficult time producing the sentence "please hand me a glass of water; " however, there are many ways to work around this. One can point to the glass, can show a picture of a glass of water, can get the glass of water him or her self, or can write part or most of the sentence on paper. What happens when one wants to share feelings about how being diagnosed with an illness has followed with a mourning of a life once lived? Or what happens when a person wants to explain to their friends how fatigue is so bad that he or she can not stay up late anymore despite a desire to, and even though it causes sadness. A person can try to share these experiences but they are much more complex than trying to communicate "pass me the glass of water." This can leave a person feeling very alone.

Aphasias or Dysphasia can sometimes rob one of the "being with the other" moment--the moment where one can really be with a loved one, share emotions that come from a deep place within, and let the loved one witness the affective reaction that comes with sharing. It is a beautiful thing to cry with someone, to yell out your frustrations, or to just hear you. So what can people with such a cognitive predicament do? Yes there are cognitive exercises and speech pathologists that can sometimes help; however, not always. Regardless, one CAN share how he or she feels even when he or she cannot find the words. Try to speak what you want to say. People who love you will be patient and sometimes may try to fill in the words for you, to which you can then tell them if it is the right word or not. You will be surprised how sometimes loved ones can be so attuned to you that they will be able to identify words that you want to say. If the situation is more serious and it is too difficult to try to speak your experience, consider another communication medium such as drawing or painting. The image may not be the exact words that you want to share with the other person but the key is that you will not be alone with your experience--you will not be isolated from the people around you. Most importantly, never underestimated the power of non-verbal communication. Sometimes a glance, a posture, or a gesture says a thousand words. You can show a loved one your feelings though non-verbal means and then you can let them be there for you.

So perhaps you wont be articulating yourself perfectly using precisely the most appropriately chosen words anymore. Yes it is a loss...a sad loss. However, do not forget the most important thing, which is making sure to not isolate yourself. Anger and sadness about loss can leave people wanting to shut themselves up alone in a hole, especially when it is hard to verbally communicate. People need people to be with each other and to acknowledge each others' existence and feeling states. I am not saying that it wont be frustrating at times, but you CAN share how you feel without words...just be. Be with others and there will be a way. You will not be alone in your experience ... you do not have to.