Out Of Touch (Interactive Post!)


Has anyone else found that longs years of illness have left them out of touch with reality? I have been giving this a lot of thought as of late (but not for the first time over the years) how illness leads to isolation and isolation changes how you go about doing things and how you go about doing things changes how you think of things and how you think of things changes your perception…….

I am doing my best to articulate all this but I am not sure I am doing a very good job. I think there is a separation between the chronic illness sufferer and the rest of the world that creeps in over time. It is like a slow ebbing away that you do not notice until it is huge, and you wonder how you got so out of touch. I have observed that is why there are so many female Lyme bloggers, they are trying to reach out using their words. I also think that they are all articulate well spoken women who have learned to use their words to convey all their thoughts and emotions. (We all seem to be pretty open about what we are going through, thinking and feeling). I know I find that it is through writing that I express myself most easily… I know at least part of this is because when the brain fog comes I can pause and think (lol).

What has started scaring me is that everything always sounds right in my head…I know what I mean but I am frightened I no longer know how to “get it out” right. Does that make sense? I have a hard time feeling worthy of being around people and that I am viewed differently than all the “normal” people. So just when I have been feeling a bit better physically I just want to crawl back in my hole like a little ground hog and hide again. I know that fear isn’t right and feeling demoralized isn’t right…. I think part of this apprehension is just spiritually oppression to keep me bound in fear and away from people. That part I need to pray through. I am going to commit to fighting this feeling though and do a better job of reaching out. I know that feeling sick or not I could have done a much better job over the years of not letting myself disappear.

For those reading this on the My Color Is Lyme Facebook page (and those here on WordPress) could you help me out and let me know about your experiences with isolation and social fears and negativity? What about any backlash for sharing too much on your blogs?

13 thoughts on “Out Of Touch (Interactive Post!)

  1. I know what you are trying to express deeply. I use to be able to closely connect with people (I was a psychotherapist), and now I find I sense I am in a different reality than the people around me. Perhaps my mirror neurons aren’t doing to well, and my right hemisphere isn’t operating optimally; certainly my frontal lobe isn’t fully functional. I am consciously aware most of the time I am blind to part of my brain. I just can’t put my finger on it. Isolation is my life. I feel wasted days slipping through my fingers. It doesn’t help that people can’t understand me when I speak. Hope is my friend, and I am letting God tell me what my service through this is going to be. It is in some way comforting to connect with other women that truly know this experience! Thank you

    • Thank you for sharing Caroline. It sounds like God is really stretching you. It is interesting how your training and experience is in psychotherapy and you are able to recognize what areas of your mind are being affected. It is scary when you realize the way you think (or not think, lol) and your personality are highly affected by disease. I will say through treatment it does get better. The fog does eventually lift. But mental incapacity is by far the scariest symptom of all and it does create a sense of disconnect with reality.

      • Thank you for your encouragement. It is really interesting and scary and that same time. It reminds me of (my mind went blank LOL) that woman on Ted that is a neuro scientist that suffered a stroke in her right hemisphere. I think her name is Jane or Ann. She spoke so eloquently about her experience and about how it changed her.

  2. I understand, Jennifer and Caroline. I would (and will) be horrified if I experienced backlash on my blog! I must say that I am selective as to which postings I put on Facebook. It’s just too open of a forum with folks beyond the community of those recovering from illness. I doubt anyone bothers to read a blog about illness who isn’t truly interested!

    Isolation is my life too. Tonight was particularly difficult. I cried out to my Heavenly Husband for help and He met me on my bed of illness. So grateful. I’ll be praying for you ladies tonight.

    And don’t go away, k? Lovingly, J

  3. This is a very interesting post. I’m male and find it difficult sharing this side of things so I think I’ll open up here because you caught my attention.

    I’ve been sick for eight years. Today, I have no friends. I don’t mean there’s people I see occasionally or go for dinner with – I mean no friend, zero, talk to nobody other than my immediate family. I’ve deleted Facebook, Twitter, MySpace, and if you check out my blog you’ll see I’m anonymous. I have deep social anxiety and personal identification issues only because of my illness and what people think of me.

    I’ve had doctors refuse to treat me because they think I’m on drugs (sleeping 20+ hours a day and having 50+ symptoms is no excuse for a doctor to tell you you’re on drugs). I’ve had other doctors tell me it’s in my head, others still saying they don’t believe I’m ill at all, psychologists and psychiatrists that can’t help, colleagues that no longer talk to me or seek me out to see how I’m doing. False relationships I thought were once meaningful. If ‘a friend in need is a friend indeed’, then I’m completely alone.

    Over time, this has resulted in a deep-seated anxiety, stress, and low self-esteem yet my doctors label it depression. It’s like comparing a golf ball to a shark. I know I’m not depressed. If doctors won’t believe me then how can I explain this to others? I’ve been telling doctors for years I’m not depressed: I’m pi$$ed off, feel guilty, frustrated, and believe I’m a burden to my family and society. It’s not depression yet they don’t treat the problems I’m telling them I have.

    You’re right – it’s like one has to hide these problems and push it deep down, and this ripples through one’s social life until the realisation dawns that the humble computer is your social life, and for me, even that’s limited by removing personal identity.

    The Facebook and Twitter deletion was because of a backlash I had that resulted in an “implied threat” even though there was no threat at all. It all but destroyed me because of one person’s vendetta (the fact I was promoted was never even deliberated). One person’s poison almost destroyed me when I was at the lowest and sickest part of my life. To this day I wonder why they believed this poisonous person and not me. I think that was the ultimate trigger for my withdrawal and it made me sicker.

    These days I find it, solely through illness, it’s difficult getting back to work. I don’t know how I’ll be around other people. I’ve had negative comments from work about returning which isn’t helping. Talk about beating a man when he’s down. I tried to talk about it all once and apparently all my symptoms (Lyme, EBV, Low-T, QFever, MTHFR defects, Kryptopyrrole disorder, elevated histamine, adrenal fatigue, chemical environmental and mold sensitivities, human parvovirus, and other things I care not to mention) – these apparently are all ‘the man flu, just get over it’ and ‘you’re not doing enough to get better’ (despite the 30-odd doctors and specialists, the 24+ tablets I take a day, injections, the crashes when I push too hard and I think you’ll be able to itemise many other things – on a side note, why I have to constantly try justify it is beyond me!). This among other comments have made me distrust people’s perception and understanding about what I’m going through and how hard I’ve fought these problems over the years.

    Perhaps the main difference between you and I is I don’t usually reach out – it may be the male/female thing. I’ve stopped trying to get people to understand. If they don’t trust the fact I have a deep-seated problem that’s not going to be solved overnight; if they want to be blind to my struggle and my tenacity at fighting it then in my view, they’re not good enough for me. I am now preferring isolation and enjoy my nuclear family around me because they understand. They’ve seen me at my worst and they know beyond a doubt the suffering. When I hike again (remaining positive about this one), it’s alone, in forests and mountains, and it’s my zen. When I was feeling good last year and hiking, the open space was my friend, the sounds of the wilderness the voices I wanted to hear, the trees were the inhabitants of the land I felt comfortable around and if any psychologist says that it’s unhealthy to not interact with people and be a ‘normal’ part of society, then I’ll simply roll my eyes and wonder which textbook they’ve used.

    I used to have severe panic attacks when people attacked me on blogs and other social media. I still do so be nice if commenting to this 🙂 It isn’t a sign of weakness. It’s a sign I need continued medical help.

    I’ll stop here. I think you’ll understand how much social influences have twisted me over the years. Many people are judgemental. I can’t change that, but I can change whether I choose to know them or not.

    • Wow I am blown away by your experiences! First I need to say thank you so much for sharing and being bold and open. You are definitely not alone with such horrible negativity (sorry to say), and yours is not the first time I have heard about so much negative backlash. It is sad when I hear about people’s families even abandoning them because they think the person is only out to get attention.
      Just keep surrounding yourself only with people that really love and support you, and people that can relate to your situation. (even if for now they are online friends).
      If you feel you haven’t received the best treatment yet I can recommend two outstanding doctors:
      Mary Ross MD http://www.thehealingartspartnership.com (my doctor)

      and Dr Anthony Smith http://www.lymestop.com (I have two friends that have gone to see him).

      Hang in there, you are not alone.

  4. Wow Jennifer you sure have raised a very big topic! Though I was lucky enough to make it through the worst of my illness while still employed so not as isolated I can still relate to so much of what is here. At my worse, I was so afraid of backlash from my employer (like loosing my job & health insurance) that I did not talk to most people about my Lyme. And even when I did, I usually didn’t talk about the brain stuff. What helped me then and still does now even though I’m about 90% better is occassionally going to a Lyme support group meeting or conference or workshop or meeting 1-1 with a Lyme friend – being with other people who really understand. I don’t think other people mean to be malicious, they simply don’t understand and our medical and government leaders are not adding to understanding they are distracting from it. None of us want to be part of a medical controversy, we just want to get better.

    As I’ve gotten better I’ve tried more and more to focus on things that make me feel joy and deliberately adding those things in my life. I do think that contributes to healing and it just plain feels better than thinking about my Lyme flare-ups. Right now I still take meds 5xs a day & eat a very restricted diet to maintain my improved health – that still makes me different from most everyone else I know except for other Lyme friends that are doing the same. Hugs to you.

    • Thank you for contributing to this discussion. I am really interested In everyone’s experiences. Like you I have been “functioning” through most of my Lyme treatment and only went through about 3 months of being bedridden and unemployed. I think my experience is very much just being in survival mode and using what energy I have had to get by, just doing the basics. Where I feel isolated is that I put everything into my job because I have to and I never feel like being social because I am too tired, even on weekends. I am on another upswing though and I have great hope that this will change. In the meantime thank goodness for technology.

      • Wow Jennifer: you have such a sweet way of drawing us all in to this inner circle who understands. Let’s consider too the One Who will never leave us or forsake us. I’ve been literally crying out loud to the Lord recently and He has helped me immeasurably, even speaking to my heart as I writhed and screamed in torment with seizures last night. You would never know that a couple of hours earlier I was walking with a new friend and enjoying the outdoors.

        So there ya have it: walking outdoors and wretched seizures for hours all in the same night. It teaches me to make the most of the moment ’cause I have not had the first part in a long time. Just like the apostles taking a boat ride as the Lord rested only to become terrified in a raging storm. He then quiet the seas, strengthens our faith with His reminder of who He is. It’s a reminder that quiets my broken frame raging in sickness. It reminds me that I was never alone.

      • Oh Julie this just breaks my heart….. I am praying for you. It is true that we do have a Savior who is there and brings peace and quiets the storm. Can you imagine going through this without Him?

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