During online research, I have run across a number of explanations as to why people in our lives fail to be compassionate when we share about our illness. I'm sorry I don't remember all the sources (brain fog!) or else I would supply them here.
Explanation #1: Denial
Denial is a psychological defense. When some potentially upsetting news is heard such as a loved on being ill, people wish and hope it isn't true. We often hear responses like:
"you look fine",
"getting older"
"suck it up"
"you're over medicated"
Denying reality is a way for a person to avoid feeling the unpleasant emotions that are triggered by hearing that you are suffering. The stages of grief according to Kubler-Ross are Denial, Anger, Bargaining, Depression and finally, Acceptance. When you first announced the news of your illness, your family and friends may have cycled back and forth through the stages of grief till they reach acceptance. Also you yourself probably have or are going through the stages of grief before feeling at peace with your life. Some people never reach acceptance, they are just too emotionally fragile. One example of this is when an illness triggers a spouse to reject their mate.
Physicians also use Denial as a defense mechanism. Doctors who have failed to diagnose and provide adequate treatment are confronted with a level of guilt and perhaps feelings of failure that cause them anxiety. Being dismissive or critical, ie: "It's all in your head", "Hypochondriac", "Normal Life Stress" "Menopause" etc, are responses that help a doctor push away feelings of inadequacy.
Explanation #2: Inaccurate Beliefs
I was surprised to learn that some people believe that an effective treatment exists for every disease and that generally an immediate diagnosis is the norm. By believing there is a cure for every illness, they feel secure about their lives. ie: 'If I get sick, I go the doctor, get medication, therefore I can always stay fully functioning'. They conclude that if you're still sick one year, or two years later, that you are somehow at fault, either neglecting yourself or living an unhealthy lifestyle in some way. Also I think people believe that if you were really as ill as you say you are, you would hospitalize frequently or perhaps in a nursing home.
Why does it cause anxiety for people to hear that we are chronically ill? When confronted with the reality of your illness, people recoil because they feel anxious at the thought that some similar illness could befall them or someone else that they love. When speaking about people with disabilities, wheelchair-bound psychologist Dr. Dan Gottlieb says, "We are their worst nightmare". Your family and friends may also feel nervous about whether or not they will be able to cope if you should someday need their help with your care. And being a caregiver can be a big job.
Explanation #3: Empathy Related Disorders
There are people with disorders that cause them to lack empathy to varying degrees. Some are unable to understand another person's point of view. A few that come to mind are personality disorders, developmental disabilities like autism or ADD, people who are substance abusers and others who are just adults who lack coping skills.
Working Out My Own Personal Happiness
Everyone has problems, even the people who seem to be having an easy life. We all hope and expect life will be smooth sailing, which is kind of unrealistic thinking. Life has it's share of adversity and injustice. Even though I'm very ill with Sjogren's, I still have a life to live and I make sure I enjoy every single day. I have learned to take great pleasure in the simplest things that I used to take for granted. A hot shower, a clean towel, a cup of tea, being able to wipe off the kitchen counter are all now joyful occasions! lol And yes I smile and laugh every single day, heck yeah! I know I have to stay cheerful for my own sake as well as others around me. I have many wonderful friends online where my illness isn't so obvious and doesn't cause so much friction in my relationships as it does in real life. I am a no-show at weddings and funerals and people just don't understand why. One of my loved ones who was indifferent to me for several years finally came to a point of understanding, and is being increasingly supportive of me. We have a great relationship now, it's a gift that I'm deeply grateful for.
I hope I did a good job of explaining what I've learned and that my post here is helpful!
-Steph
Excellent post. Thank you!
Steph,
Good insights!
I was guilty of being unsupportive of my own mother, who also had Sjogren's. She rarely left her house, appeared to be lazy, and didn't look sick. I loved her, but I thought that she was self-absorbed. Only after she became very sick I realized what was happening to her. If I could go back in time, of course I would be her advocate.
The people around us don't understand what is going on inside us. The illness isn't obvious, so our complaints sound like exaggerations. Lack of understanding does not mean that you aren't loved.
I like your determination to make the most of what you are able to do, and I approach life the same way.
Make today a good day!
Cheryl
Great post...thanks for sharing your thoughts and research! I think you hit the nail on the head with your 3 explanations....and I absolutely agree that we have to make our own happiness no matter how small these things may seem to others.
I like your positive attitude and that you took the time to share it with us here! Thanks again.. :)
As for InAccurate Beliefs:
I used to think doctors, especially specialists, were all knowing and could diagnosis whatever was wrong with a person and either fix it or help alleviate the symptoms.
Until you have a death of a loved one, does it REALLY hit you that doctors just can't cure everything.
Reality is Scarey!
Great post! It's so true too. I've seen this repeatedly in so many people I know. The worst cases are when people adopt multiple reasons (#1 and #3 at the same time has hit me before).
Thanks so much for the articulate post. I think all of us have encountered these type people. It is nice to come here for support when we do not receive it from those who are around us. Hugs to you all. Redetha
Sometimes I think it's just outside of people's understanding and the only way they could understand is to experience it firsthand - and we don't want them to have to do that. Yes, life is frustrating but if it wasn't everyone would be ill.
GREAT POST.
Absolutely true.
People don't want to hear bad news, are afraid of something happening to themselves, sometimes don't want to be bothered, and are helpless when they can't be helpful.
This is true of everything from a delinquent child to a parent with Alzheimer's, and everything in between.
WE are all toooooo human.
And so we carry on.
At least most of us are more tuned in to others now.
Kisses
Elaine
I think I was not responsive to people with problems, not because I did not feel for them, but my children's problems weighed so heavy on my mind.
I tried not to tell people of my problems because it is too much for people to take in. I don't want sympathy or anyone feeling sorry for me. I just don't want to have someone say well she is sick again. I love this post.