Living with Chronic Illness and Pain Can Be Lonely

By LanaPA Latest Activity January 14, 2011 at 10:02 am Views 1,911 Replies 7 Likes 4

Lana

Years of dealing with chronic illness and now advocating for arthritis and fibromyalgia, I know first hand the reality of that loneliness. A person dealing with a chronic illness can feel alone even in a room full of family and friends. There are two reasons why we feel lonely. First, because of the physical inability to do things as a result of our conditions and second, because we feel like no one in our lives understands the struggles we face daily.

Believe it or not – loneliness and aloneness are two different things. A chronically ill patient feels both of these things. While support groups help with the loneliness part of this, you still feel alone in your own body.
Loneliness is the feeling of isolation and disconnection because certain needs in your life are not met. The needs that are not meet in the case of chronic illness and pain are the inability to get others to understand especially when you are unable to describe those feelings in words and also the inability to feel in control of your body.

Aloneness is very hard to describe. This is generally the feeling like you are so very alone in this world. I once described this feeling to a friend as, “feeling like something was nagging at the inside of me and eating away at my emotions.” I am not even sure if that is an accurate description because all of us feel differently when it comes to aloneness. However, this is how I felt when I was first diagnosed. I would go online and read stories of those suffering and I would end of in tears because I knew those people were alone too. Those first six months after my diagnosis were probably the most alone I felt in my entire life. I felt like everyone around me was “normal,” and I wasn’t. How could I be normal in a world full of healthy people?

It did not take me long to realize that I wasn’t alone and that were so many people out there feeling what I was feeling. They were others like me struggling to find meaning and purpose in their lives despite rheumatoid arthritis, fibromyalgia, arthritis, chronic illness, etc. I wanted a reason to feel like I belonged and I found it among those who understood what I was feeling. I started blogging about my feelings and the response was overwhelming. I was outspoken about these feelings and others would tell that they were feeling the same way but couldn’t put those feelings in words or they were afraid to speak up.

It took time but I learned one day at a time that I wasn’t alone. I am not saying that these feelings do not sneak up on me from time to time because they do, but I learned that while I can’t always get understanding and support from family and friends, I could find it among those who understood via support groups and arthritis/fibromyalgia/chronic illness bloggers.

How do you deal with feelings of loneliness and aloneness?

Does support help or would you rather sort through these feelings on your own?

How have these feelings changed now that you had time to learn how live with your diagnosis?

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Replies (7 replies)

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  • bambam1213
    bambam1213 February 17, 2011 at 7:48 pm   

    hi i am 42 with chronic lower back pain and srthritis, i have 2 boldging dics and narrowing in my spine. i feel alone now then i have felt in my life, like no one understands the pain i am going through. i was on a lot of pain meds now my new doctor thinks i dont need to be on them she is taking me off of my pain meds and now the pain is even worse. she stilll thinks that i dont need them but i think i do, do i think i am addicted to them, yes, do i think i need them, yes. i do not know what to do any more. she put me on backlaphin and they are not working. i am lonelier then i have ever felt. sincerely, James

  • SZane
    SZane May 3, 2011 at 1:00 pm   

    DearJames, I have that and more. You have to get your Dr. to refer you to a
    a Dr that is a Pain Specialist. A regular MD oan't give you pain medicine
    continually by law. I travel 60 miles to go to my Pain Specialist. He may
    recomend a neorologist to consider surgey.You have to go to the larger city to
    get the help you need. Hope this helps a little. Sincerly SLane

  • Lin Bigknife
    Lin Bigknife February 17, 2011 at 9:10 am   

    HI! I'm 57 and was diagnosed with RA 1 year ago and with Fibro 20 years ago. It has been very lonely as my family doesn't "believe" I have "all" these problems - they feel the docs just keep me on meds to get kickbacks (I know, isn't it ridiculous!) and they will not acknowledge my pain or inabilities. My husband is better but my sons and siblings are terrible. It is really sad that in addition to these diseases, I also must cope with family seperation! Has anyone else experienced this type of isolation? I cry a lot and take anti-depressants, but they just keep away the suicide, not the loneliness!

  • rjendre
    rjendre January 16, 2011 at 9:31 pm   

    Hi, i am a 48 year old with RA. When I first found out I had Ra I was really depressed, that was two years ago and i have pretty much come to grips with my illness. I have never really felt alone because of my family, which really support me well. Thank you

  • 2573
    2573 January 16, 2011 at 12:28 am   
    Edited January 16, 2011 at 12:28 am by 2573

    Hi I am 74 years old and have been suffering with some kind of pain since 1960 after being in a bad car accident. So it is one day at a time.

    They won't give me pain medication because I have trouble with them and am on too many meds now.

  • Lana
    LanaPA January 16, 2011 at 8:21 am   

    Have you considered pain alternatives? Here are some names you can ask your doctor about: Capsaicin, InflaThera or Zyflamend, Aquamin, Sam-E, Fish oil, and Methylsulfonyl-methane (MSM): Here is a link that details how these products work to help arthritis patients. http://www.msnbc.msn.com/id/26136767/ns/healt...

    Don’t start anything new without talking to your doctor because your doctor will probably know which alternative medicine option is best for you and your condition.

  • 2573
    2573 January 16, 2011 at 10:49 pm   

    Thanks I will check this out.

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