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CFS implications for family, how to communicate?

Blog entry posted by lnester7, Jul 17, 2012.

So mentally my situation is the following:

I was raised that pain is personal and when you are sick you suck it up and keep going. So, that did not work well for me in the first 5 years of CFS so I decided to change.

I am wondering what level of detail is necessary for family and friends to understand the situation without sounding that you are whining all the time, what is the balance between I need you to understand what is going on Vs I am complaining or venting???

When the symptoms put myself in danger or family I try to be very specific. On those symptoms that affect me only as an individual, I am very vague, but I have come to realize that those symptoms can be fatal and betray you in ways you cannot even begin to think of. So where to draw the line?

Example: I used to read. A LOT!! I have told my family I don't read books because I cannot read. I cannot follow a book. I can read a few sentences in forum ( I know I don't have to explain to you all) but it makes no sense to another "normal" person why I can read some things but not another. Heck is a mystery to me too.

So I read the doctor instructions on Imunovir wrong and was on wrong doses of medication for 4 months. I read that thing countless time, but I translated the information wrong every single time. How do you explain that!!! So even though I told my family I cannot read, they see I do not grab a book, heck I cannot even follow tv sometimes, so what makes them think I can fill out forms or anything to do with reading the right way? Is it that I do not communicate well enough or Is my responsibility to say no to all, in case I am having a bad moment?!?!?

Is it that I don't know how to ask for help properly or the implications of our limitations are impossible to be understood by a normal person? !? Sorry post getting long here.

Example 2 :

I have explosive diarrhea: I do not tell family that I say "my autonomic system is broken". They know I have to go to the restroom when I have to go, but don't know the details of what my autonomic system is not working properly is (cant swallow, digest, poop, pee, sweat..).

Hemorrhoids: I keep to myself most of the time unless it prevents me from regular activities:oops:, nausea, dizziness, the very annoying stabbing pains, the burning..... I can keep going all day. They do not know half of the story.

Now I say "I am having a bad brain fog day" I am not sure that is translating properly, so that is where the issues come in. Do they understand anything to do with brain controls are off. I cannot think straight not even my own name??? that probably me doing a Doctor's appointment, even though it sounds simple enough, is beyond my capabilities??

How do I learn to say things in a new way where a "normal person" gets what I am saying without me sounding whining but getting the seriousness of the situation across??!!?!? Where to draw the line?
Xandoff, merylg and warriorseekspeace like this.
  1. alex3619
    This is the way I have been thinking of it recently. We know things in a factual way, but we understand things based upon experience. That experience defines the limits of our intuitive awareness. So when you tell someone something they have the facts, but the understanding is coloured by what they have experienced. Its extremely hard for someone with no experience of anything similar to understand. The good news is that come the day they experience something similar, if they are honest with themselves, they will finally understand.
    warriorseekspeace likes this.
  2. Don Quichotte
    There are two different things:

    One is very practical, when you need someone's help because of your disability (such as filling out forms or picking up something).

    The other is wanting their understanding, sympathy and emotional support, but has no practical ramifications. (such as pain from hemorrhoids).

    I would differentiate between the two. Discuss the practical issues clearly with everyone that needs to know. Discuss the personal/emotional/coping issues only with those who deserve to know. Those who are your true friends and will be there with you to hold your hand during hard times. Those who love you for who you are and will not care less about you because of your illness. Those who will share with your their hardships because they feel the same about you.
  3. Xandoff
    Inester7
    Thank you for your post. It is the Theme of our existence. How to communicate.....wow. I believe the real problem is that we were once normal people who have devolved into something different but we have the same program that we were using when we were "FAB". Now that we are no longer FAB, we are damned if we say something and damned if we don't. Thank you again for putting this to good words. The book reading thing is right on for me. I get mad at myself when I can't navigate life the way I used to. A appointment with a regular GP Doctor is an exercise in futility. Keep the faith. Thanks Inester7!
  4. stefny
    Hi Inester7, Just read your post and I don't have an ounce of advice but wanted to say I know what you mean! You described the brain fog/reading thing really well. I don't understand it either so it's hard to explain. My sister sometimes asks me to proofread stuff... long scripts and yeah, also like taniaaust1 says, it's too hard to keep the characters and their situations straight. When it takes me too long to do it or I say I can't she takes it personally and thinks I don't care... or something. I know it bugs her. I personally have given up on trying to get the family (or anyone) to understand. It's the worst part about this illness aside from actually having it for me at least, and a lot of us I guess. Just wanted to say I hear ya.
    CJB likes this.
  5. taniaaust1
    That reading thing.. Im okay with books now but couldnt read them for many years. The way I explain that.. is that I just couldnt hold the various story concepts in my head.. there are so many different ones in a book, different characters and their situations to remember in a story. Hence completely different then remembering something you've quickly just read online. Confusing or forgetting a detail .. can mess the whole understanding of what is going on in the story.

    My reading .. can be at times like dyslexia but with whole words. I can need to read something several times to understand it. Maybe trying to explain its like struggling with dsyslexia but with whole words would help someone to understand a little? or like trying to read while drunk!!! May help some normals to understand our trouble reading. (get them to drink a bottle of wine before reading a book!).

    "How do I learn to say things in a new way where a "normal person" gets what I am saying without me sounding whining but getting the seriousness of the situation across??!!?!? Where to draw the line?"

    I think that also depends on the person you are trying to share with. Many people just do not wish to really know how sick another is and hence may rather just like to think the person is just whining and things cant be all that bad.

    I think really planning in advance on how to say something and examples which may be used to help them to understand better may help.. rather then trying to say something over and over.. as you just dont know how to explain it well. Pick a time when your brain is having a better moment too.. to try to explain things. (and dont overload them with too much stuff at once)

    A well thought out letter to explain something could also be the best way to go if explaining verbally is too hard.
    CJB, merylg and stefny like this.
  6. taniaaust1
    Sadly I dont think "normal People" can really understand it. I dont know any way to get them to understand how much our brains have to work, just to think!! I know my boyfriend thou he is very good at understanding things with me (as Im so descriptive and open) he thou after several years of us dating, still doesnt have a clue about the effort it takes to think. It just isnt comprehendable to the normals and there is no good comparsion situation to use for an example for them to see themselves in.

    "I was raised that pain is personal and when you are sick you suck it up and keep going. "

    Yeah same here. If I cried as a child cause I'd hurt myself.. I would be told "only babies cry" It took 7-9 years before I went open to them about the ME/CFS and what I was experiencing... all probably due to my upbringing.
    merylg and stefny like this.