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.

How to Deal With Loneliness

Kennedy's Disease is often a lonely disease (most of us have gone through the "why me" phase). Having a significant other to share those times is important, but what happens if you do not have a significant other or close friend? I found the article below on the web. I believe it has some good advice for those without significant others or who are just feeling a little lonely because they cannot get out and participate in activities as they used to. I hope it provides some 'food-for-thought' for all of us.

How to Deal With Loneliness
by Margaret Diehl (http://www.wikihow.com/Deal-With-Loneliness)

People feel lonely for a number of reasons, such as not having enough friends, not knowing how to be close to the people you know, or not being accepted by those you try to befriend. Everyone experiences loneliness at some time in his or her life.

1. Realize that we all get lonely. It does not mean there is anything wrong with you. We are particularly prone to loneliness when we are making transitions, especially for the better. If you are changing, such as exploring new alternatives and paths for yourself, you are bound to get a little lonely as you look for people who share your new interests and thoughts.
   
2. Call or get together with the people you know, even if they are not who you want to be with right now. Human contact makes more contact easier. This includes your mother and the person at the deli counter. Listen more than talk. Listening, and drawing people out will deepen your contacts more than just talking endlessly about yourself.
   
3. Get involved in anything where you will meet people. Look for community events/activities in your area. Volunteering can help. Do not attend functions with the idea of making friends or meeting people. Being too demanding is a sign of loneliness. Try to go with no expectations whatsoever, and to enjoy yourself regardless of what happens.
   
4. Challenge yourself to take the initiative in social relationships whenever you can. YOU ask the person if they want to chat, get a coffee, whatever. Remember how much you like it when people are attracted to you. Remember though, that you are trying to make a place for yourself in another person's life. Do not think that just showing up will win you instant friends. It can be a long, painstaking process, and most people you meet already have their own friends and lives. You must always show interest in other people before they will show interest in you.
   
5. Take risks about revealing yourself. Say what is on your mind, if it seems at all likely the other person will be receptive. It can hurt when it backfires, but it is worth it a million times over if it works.
   
6. Remember that we are all alone inside our heads; we are born and die alone; it is nothing special. Every person who has ever lived has been lonely. Love would not exist without loneliness to inspire it. Look at your loneliness with detachment.
   
7. Notice the difference between loneliness and solitude. Imagine this is the last day you will ever be alone. What would you do?
   
8. Join an online community. Sometimes it can help.
   
9. When feeling lonely, do not allow yourself to wallow in your loneliness. Do something, anything! Take a walk, ride your bike.
   
10. Do everything you would normally do with a partner or friend. Many times it is not the partner or friend you are missing, but the activities and hobbies you shared. Take yourself out for a date. For example, if you would have gone out to dinner or to a movie on a date, then take yourself out to a movie or to a nice restaurant. Do not hold yourself back.
    
    

Some Helpful Tips:

• Connect with anyone who you assess to be genuine, and who is around you.
  
• Set up social activities when you are not feeling lonely. Anticipate when that will be and be proactive.
  
• Read literature and go to museums/theater/dance. Art reaches inside.
  
• For those with religious beliefs, consider fellowship with those of your faith.
  
• Remember that reaching out to someone else lonelier than you could give you more happiness than you could imagine.
  
• Learn to meditate so that you have the experience of being loved and nurtured emotionally by other sources than human beings.
  
• Consider getting a pet! Animals can make marvelous companions; they give unconditional love, and can offer you loyal company. Walking a dog can also be a great way of meeting other people!
  
• Try not to get stuck in a rut with routines; routines allow you to go on autopilot, allowing you to daydream about "what could be." Even worse, you are less likely to act on those daydreams, because you will be comfortable with your routines. Shake things up!
  
• Engage yourself in some activity that would keep your mind occupied.
  
• Remember that loneliness happens to everyone. Surround yourself with positive people.
  

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I believe the key messages in the above article are everyone gets lonely and you need to be proactive. Do not just sit there and wallow in your emotions. Recognize that taking the first step will be the most difficult, but also could be the most rewarding. If nothing else, join us in twice a month chats sponsored by the Kennedy's Disease Association (http://www.kennedysdisease.org/disc_chat.html). It is a great place to meet people with similar concerns and issues.