Coping With Loneliness When You Have Chronic Fatigue Syndrome or Fibromyagia

COPING WITH LONELINESS WHEN YOU HAVE CFS – by Catherine Morgan

Since I began working on this Chronic Fatigue web-site I have read many other bloggers with CFS, and viewed many video-accounts of people suffering with CFS. One thing stands out to me, and that is the feeling of loneliness that most all of these people are feeling. Some physically alone, others emotionally alone, many both.

I wanted to take some time and address this issue, because it seems so important. The first thing I always want to say is “You are not alone”. Those words sound nice, and I believe them 100%, but the words don’t make it so.

The two major reasons people with CFS feel alone are: 1) physically not being able to get out and be around people due to symptoms of this condition, and 2) feeling like no one in their life understands what they are going through. Sometimes I think the latter is the harder one to overcome. I wish I could call this post “How To Not Feel Alone When You Have CFS”. Unfortunately, there is no easy way to help this problem of loneliness. So instead, this post will be about; Awareness. Since awareness is always the first step to solving any problem, that is where I will start in addressing this problem…..This will be the first of many posts I will do on this issue.

Here is a video of a young women with CFS/FM, you can really feel her pain and loneliness (that is why I think this video is important to see).

It’s hard to watch isn’t it?

My heart goes out to this girl. But this is just one story…..hundreds of thousands of other people have this same story to different degrees…..many worse than this. I have to applaud this young lady for her courage in making this video, and she is correct in her statement about doing everything we can do to create awareness of the seriousness of this debilitating disease. If you have a moment (click on the bottom right corner of this video) and go to this video and rate it and maybe leave a comment for her too.

So, one thing we can do is to create awareness of this important problem, and to educate the people in our lives, to help them understand what we are going through. That is why I often suggest sending CFS awareness videos to family and friends, or printing out information (from the CDC) for doctors and healthcare providers, (you can give this information to family and friends also). I know that it is hard for many of us to do this, due to the stigma attached to the Chronic Fatigue diagnosis, but we need to overcome. We need to give the people in our lives the benefit of the doubt, that if they understood our plight, they would have compassion for us.

The other thing I think we tend to overlook is; What are we actually expecting from people? How do we want them to treat us? (This is a piece I did on the issue of empathy.) If we don’t really know what we want from the people in our life, we cant expect to get it.

You might just want your mother to understand when you don’t call, or your sister to come and help you with some housework, or your boss to allow you to take an additional break, or your doctor to understand the severity of your symptoms. Obviously, we all have different needs and concerns…..but knowing what your needs are is the first step.

My advise is; Like everything else in life….just be honest with your feelings, explain what you need and why. You may find that what you had interpreted as coldness or annoyance, was really just ignorance of your condition and how it affects you. Once you express your feeling, you may find the people in your life will really surprise you; their coldness may be stripped away to reveal kindness and compassion. So, my advice is to try and give the people in your life a chance, don’t just assume that people are unable to comprehend and have compassion for you.

This isn’t to say that you won’t have people in your life, that still just won’t care….some people really just can’t think past themselves.…Sad for them. When you come across one of these types of people (and you will), you just need to move on. No need to hold on to anger or resentment over it, just move on.

However, you may find the people you least expected are the ones that support you the most, and that is why you need to give everyone the benefit of the doubt….you never know who might surprise you. You may also be surprised and disappointed to find who doesn’t support you. Personally, I find hardship to be the path to your true friends….anybody can be your friend in the good times, who sticks by you in the bad times is the true test. And sometimes, it’s necessary to just find some new friends.

So, getting past some of the emotional loneliness can be as simple as “informing” and “confiding”….”facts” and “honesty”. You will never know until you try. It is true that CFS is an invisible disease….but you do have the power to make yourself visible to the people in your life, it is up to you. Give them a chance to surprise you.

What if your loneliness is more than just emotional? What if you are so physically ill that your inability to work or be social in any way is adding to your loneliness?

The following is a story of a young women with CFS, who is suffering with many degrees of loneliness:

Having no family and no career, I have massive loneliness attach time to time. Just like symptoms of the illness, degree and cause of loneliness changes by time and by days.

I feel lonely when I see evidences that the sign of my existence in this world is disappearing.

I used to be a practicing accountant. To improve my life and to become someone I can be proud of, I worked hard, sacrificed a lot and struggled emotionally and physically to achieve my goals. I was undertaking post graduate equivalent study to become a CPA, I once had a title “Client Service Manager”, I trained and looked after my team, and worked long hours to help small business operators. People appreciated my supports and wanted to get to know me. Small business operators talked about me as the accountant they could rely on and who understands them. I lost my long battle against this illness. It was a lousy battle. All things I tried hard to help others are insignificant and not relevant now. I witnessed people moved on and continued advancing their careers and lives.

I am scared when I recognize signs of my existence in this world and my contributions to societies are fading away. I feel so lonely to be left in this dark place alone, to see other people walked away from me, and to see that I am completely forgotten. I passed the period of intense grief. Most of the times, I accept this is my life now. However, I am still hoping.

Hope is my only solution to the loneliness. I hope that one day there will be a cure and I can somehow repossess the life I had. Or, I hope that one day I could get better and become one of 2% people who recovered from severer stage of ME/ CFS . Or, I hope that I could find something that gives me sufficient income and opportunity to contribute to society and community again. Then, people will see me again.

There was time when I could not hope. These days, I can not live without hoping. Because I can hope now, I guess my life is not so bad after all.

This is a women who is working hard to adjust to the life of someone who is “disabled”….and it’s very hard. However, she is using blogging as a way to deal with her situation, and to reach out to others who are also suffering. She was kind enough to offer her story for this post as another example of the complex problems associated with this disease, and how it directly relates to feelings of loneliness….(and I thank her for that). You can see more on her feelings of loneliness, and much more at her blog “Blue Coffee Mug”.

My advice to anyone suffering with this degree of loneliness, is to never give up hope. Just as Rachel says above. And remember that; We are not our jobs. We should not “define” ourselves by our jobs, or how much money we make at our job. For career people like Rachel (above), and myself (I am a nurse by profession but unable to work due to this illness), and maybe you……Not defining ourselves by our careers is sometimes very difficult…..but needs to be one of the first steps we take towards pulling ourselves out of this type of loneliness.

I’m going to talk more about the issue of “re-defining” ourselves in my next post. Until then…..If you have questions or comments about this post, I would love to hear from you.

Thanks again to Rachel from “Blue Coffee Mug“.

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Also See:

One Lesson From A Decade Of Suffering With Chronic Illness

From Broken To BlogHer
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