May was Ehler’s-Danlos Awareness Month
For me, every month is Ehler’s-Danlos Month. Living with Ehler’s-Danlos Syndrome*, I mourn daily. I mourn the future I had envisioned before I had major medical issues. I mourn the freedom to live each day without physical pain. I mourn the many things I can no longer do. I mourn the freedom to choose my activities without limitations imposed upon me due to issues of health.
I believe that it was 1976 when I met Elizabeth Kübler-Ross at a seminar conducted for the newly- formed hospice agency on Martha’s Vineyard. She introduced us to the idea that there were five stages of grief. Originally, these stages applied to people facing terminal illnesses. However, she realized that grief is laid bare whenever there is a catastrophic personal loss. This may also include significant life events such as the death of a loved one, divorce and the onset of a disease or chronic illness.
From Elizabeth Kubler Ross,The Five Stages of Grief
- Denial — "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the personal. This feeling is generally replaced with heightened awareness of the possessions and the people that will be left behind.
- Anger — "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame for this happening to me?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy toward others.
- Bargaining — "Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay the loss. Usually, the negotiation for an extension is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand loss in inevitable, but if I could just have more time as it was..."
- Depression — "I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"; "My life, as I knew it is over, so why go on?"
During the fourth stage, the person begins to understand the certainty of loss. Because of this, the individual may become silent, refuse visits from friends and spend much of the time crying and grieving. This process allows the person to disconnect from things that offer love and affection. It is an important time for grieving; these feelings must be processed.
- Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with the impending loss or death. They find peace.
Each new day presents me with an opportunity to move closer to Acceptance. The funny thing is that, just when I am confident that I am at peace with my life and my diagnosis, I
rebel. I plant the geraniums, paint the trim, go out to dinner. The next day, I find myself in bed angry at myself and bargaining with the Powers that Be. I resent the price I pay for the simple pleasures of daily living. It’s all up to me, however. When I successfully break this cycle, I know I will be closer to achieving a state of grace.
Go to www.ednf.org/ or you can watch http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html
to learn more about Ehler’s-Danlos Syndrome..