Loneliness and Guilt

The KDA website’s home page has this statement: “You are not alone.” I believe most everyone who learns they have an incurable disease feels ‘alone’ at some point as they go through their own acceptance process.
 

Reasons for feeling alone

• You have no one to talk to that understands what you are going through.
• Many times your doctor is not even a resource for information on your condition.
• There is little information available on the disease.
• You are uncertain what this could mean to your future employment. (How long will I be able to work, can I still do my job, etc.)
• You are afraid and often angry, but don’t feel you can share these feelings without appearing weak.
• You want to protect your loved ones, so you refuse to share your feelings and concerns with them.
• You don’t know what to do or who to turn to for help.

About thirty-five years ago I started going through this acceptance process. At times it wasn’t too bad and then there were times where I was not a ‘happy camper’. Fortunately, I have a wonderful wife who is very supportive and understands that I am not always going to be ‘Mr. Personality’. She knew when I just wanted someone to listen and when I needed comfort. We got through it then and continue to go through it today as the disease progresses. In my humble opinion, ‘acceptance’ is a personal journey; not a destination state.
 

What could be worse?

In my opinion, there is only one thing worse than the feeling of being alone in this world. That is the guilt you feel because you have burdened your significant other/spouse with having to care for you. I call it the ‘martyrdom phase’ because you begin to think your loved one would be better off without you. You already see the progression and the loss of certain abilities, but even worse, you cannot imagine how your spouse/significant other could continue to love you for the burden you have given her/him as caregiver.
 

Just another stage ...

Fortunately, both loneliness and guilt are just phases in the acceptance process. If we understand that these are just phases, we know that ‘these too will pass’. Once we recognize that these feelings are just our ego being challenged; it becomes easier to look for positive ways to reinforce relationships, share feelings, ask questions, and move on to the next phase. Reading about it is one thing; living through it is something else. It is not easy, but it is a necessary part of growing and living with your disease.

And, always remember,

YOU ARE NOT ALONE!

Follow this link to read more about the nine stages of the acceptance process.