Coping With Loneliness When You Have Fibromyalgia

The Problem of Loneliness

Chronic pain and Invisible Illness are difficult conditions to live with and can lead to social withdrawal and loneliness. When you get sick, not only do you have to process and deal with things like surgeries, recovery, medications, new symptoms and flare-ups but socially you may have to give up hobbies and activities you once loved, making it hard to nurture friendships and relationships with those close to you.

 

It’s hard for those who love you to understand why you might have to cancel plans last minute or leave during the middle of the evening. Because they’ve never experienced what you’re going through, it’s hard to have a frame of reference. Unless you’ve lived it, it’s impossible to make others understand.

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Social Isolation Is Serious

Because of these changes that we have to make – like leaving in the middle of something or cancelling plans – we open ourselves up to feelings of social isolation, depression and anxiety and guilt.

Social isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people. It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated. There are several issues that people with chronic illness face that can lead to social isolation and feeling lonely:

  • Disbelief from others when you don’t have a clear diagnosis
  • Physical limitations due to pain or fatigue
  • The unpredictability of symptom onset
  • The trigger of symptoms related to noises, smells, etc.
  • Lack of a strong support system (Family and/or Friends)
  • Changes in employment or financial stability
  • Loss of hobbies and outside activities

Social isolation and feeling lonely are important health problems and should not be overlooked. The chronic illness population is at an even higher risk for social isolation and this problem should be addressed with your Doctor along with other symptoms and risk factors.

What You Can Do About It

When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse. The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.

So what can you do when you start having these feelings?

1. Recognize loneliness for what it is, and accept that you have these feelings. Self-awareness is important in making positive changes. When you catch yourself falling into old habits, you’ll be able to more quickly turn things around.

2. Use Cognitive Behaviour Therapy (CBT) to help reframe your thoughts to become more positive and open to socialization. This can be done with the help of a therapist or through online courses and over time, can be very effective.

3. Resist the temptation to isolate yourself and start forcing yourself to recognize if this is your “go-to response. Deliberately try doing the opposite of what you’re feeling – instead of retreating into watching TV, take a walk or pick up the phone and call someone. The more you resist the temptation to isolate, the easier it becomes

4. Fill your life with loving positive people who are patient and trustworthy and who truly try to understand what you are going through. They will be your encouragers and biggest support system. Remove negative people from your life…you don’t need their energy.

5. Try one new thing each week that will get you to meet new people. Try an art class, go to yoga, volunteer… anything that will get you to meet new people who like doing things that you like to do.

6. Seek out a support group for your illness. This is a great way to meet people who really do understand what you’re going through. Even an online group is fine to get started as being with like-minded people will help to engage you instead of isolating you.

7. Ask for what you need in your life. Don’t feel you’re being a burden on others…when someone asks what they can do for you to help, they genuinely want to help. Let them…give them the opportunity to be of service to you. Perhaps it’s to invite you out for coffee once a week or to go take a class together. You’ll be helping them as much as they will be helping you.

8. Consider therapy. It can help you explore any deeper issues that might be contributing to loneliness or social isolation. Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.

Remember, 

There Is Always Hope

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10 thoughts on “Coping With Loneliness When You Have Fibromyalgia

  1. I imagine any chronic condition could create that feeling of isolation and loneliness. Your post will be beneficial to so many! Thank you for sharing!

  2. Some great ideas here Pamela. I resort to social media to avoid social isolation. I can’t wait until I can move to somewhere that I can get out of easier. It is really frustrating when I have a physical struggle to leave the house. Thank goodness I have an understanding and supportive husband. I couldn’t imagine being in this situation without him!

  3. I can relate to so much of what you wrote because my husband suffers from chronic pain. You hit the nail on the head! This is an excellent reminder for me to be more patient and encouraging to him and to keep my expectations low when making plans in case we need to cancel last minute.
    Thank you!
    Lisa

  4. I think there is so much we don’t usually think about. My husband is really very unwell at the moment and has had chronic back pain for years. Pregabilin helps the pain but has side effects.. pain is very hard.

  5. I think there will be a few of us who can relate. Chronic illness can be incredibly isolating, in conjunction with the friends lost along the way, the damage to self-esteem and confidence, the inability to socialise or go out or plan the way we used to, perhaps. Very poignant post, Pamela  ♥
    Caz xx

  6. Excellent insights and advice on a very important issue. My OT wrote on my last take-home to do list, to keep engaging in fun social activities as I am able. It is easy to come up with reasons or excuses not to go out, it takes effort, but can be such positive and uplifting experiences. Thank you for your post

  7. This is so true.
    I’m incredibly lucky to have a wonderful husband who is very understanding and supportive.
    But my chronic illness and the changes we have had to make in our life have meant that we have lost a lot of friends along the way. Between those who have no understanding of what we are going through, (and frankly don’t seem to even try,) and those who just drift away because you aren’t able to keep up with them anymore it can be very lonely.
    I have to admit though, it’s very easy to start isolating yourself too, be it through anxiety about going out or just listening to that voice inside that tells you people don’t want you there anyway.
    Chronic illness can be a sad & lonely place.
    T.

  8. I’m sorry you’ve had to experience the pain of losing friends during this time in your life. A supportive partner makes all the difference though, doesn’t it? I hope you’re finding the strength to deal with losing friends and have opportunities to make new ones as you continue on this pathway.

    Thanks for writing…you are a Warrior!!!

  9. A very valuable list with some great suggestions for combating these feelings. So many of us with chronic illness know all too well what it’s like to struggle with loneliness, myself included. For me, therapy and working to build a small circle of friends online has helped so much and I think you have a wonderful variety of options for almost every personality and concern. Thanks so much for your well considered list! xx

  10. My prevailing thought upon reading your article is how easy it is to make “isolation” a go to behavior during stressful times in life. I am completely guilty of holing up in my “cave” when I feel over my head. I need to work on that. :):)

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