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Rating: 3 votes, 4.33 average.

Family seem to have little understanding

Posted 03-06-2010 05:47 PM by Myofascial Pain
Updated 03-06-2010 11:59 PM by Administrator (checking color code)

My brother who works in the medical field, recently discussed this very issue. Fact is even with all his knowledge and experience working with pain clinics, the only way he can try to relate to what I am experiencing is to try to use his imagination since he's never experienced it. Even so his imagination isn't enough to make that leap. The only family member I can relate to on my condition is my cousin who has arachnoidiitis. She finally has relief with an opiate pump implant. The other person who can semi-relate is my sister-in-law who has "loose joints" so she easily dislocates her joints. Sometimes she has to pop her shoulder back into place by herself. Anyways she can relate to the debilitating back and shoulder pain.

For the rest of my family its like [I][COLOR="Red"]trying to[/COLOR] [COLOR="DarkOrange"]explain[/COLOR] [COLOR="Olive"]color to[/COLOR] [COLOR="Green"]a person[/COLOR][COLOR="Blue"] born[/COLOR] [COLOR="Purple"]blind.[/COLOR][/I] They can logically grasp what I am saying, but can't fully relate not having the experience. By the same token, I know I can only imagine what my dad is experiencing with his MS but I read the MS boards so I can attempt to relate better.

Point is beyond those of us experiencing the same conditions, [B][I]to the rest of the world its an [COLOR="Indigo"]alien[/COLOR] concept.[/I][/B] Like a language that only we speak. Same goes for depression or any other aliment you can't relate to without experiencing. Everyone can probably relate to having a cold or toothache or scraps and cuts or even a strained muscle or sprained ligament... because most everyone has experienced it.

[U][B]So accept that your family can not understand your condition and ask that they trust your word and empathize to what ever degree they can.[/B][/U]

The summer before last my mom asked me to help out in the yard trimming some shrubs. She understood I have limited range of motion and limits in lifting. Somehow I turned/twisted/positioned myself the wrong way and my back objected by going into a series of muscle spasms that lasted over half an hour. So there I was with my shirt off so I could use it as a pillow laying on my stomach as she watched my back [I][B][COLOR="Blue"]"ripple in waves of spasms"[/COLOR] [/B](her words)[/I] each muscle contracting independently of the others for over 30 mins. She still doesn't [B]"understand"[/B] my condition but that image has stuck in her mind and made an impact so that she is willing to listen to a greater degree.

Still my family (dad, oldest brother, mother) insisted that I walk regularly contrary to my doctor's instructions. My oldest brother said I should get a letter from my doctor explaining that walking was bad for me which my doctor laughed off as folly. This year I got letters explaining my disability to Vocational Rehab and Mass Transit ADA Policy Director, of course my doctor was willing to write these as they were needed for governmental agencies. Still it took me writing a draft of each letter to convey what each government agency needed to hear. Which my doctor then rewrote. Even with these letters my family failed to accept my word that walking was "bad excercise" for me until I permitted my mother to speak directly with my doctor and he told her directly.

I guess where I am going with all this is don't set your expectations too high when it comes to your family [B]"understanding"[/B]. Best I can advise is to refer them to these boards and let them do some reading. That's probably the only way they are going to get an [B]objective[/B] understanding of your condition. All other communications, unless it comes from a doctor, [B][I] is going to be subjective and colored by your family's experience with you.[/I][/B]
Total Comments 3


  1. Old Comment
    You really speak from your heart and I admire that without even knowing
    you. Personally for me and some friends of mine, we share in some of your
    same thoughts Myo. The judgements and inabilities of some family members
    to walk in our shoes through our crisis or health issues, is truely very hard
    for some family to do. So compassion would be really helpful wouldn't it!
    But some cannot pull that off....sometimes due to ignorance or simply not
    being educated or wanting to really absorb details and side effects of ones
    medical circumstances.

    Take care until next time,

    Posted 04-01-2010 at 07:27 PM by Janaly Janaly is offline
  2. Old Comment

    Ever seen the movie Marathon Man with Dustin Hoffman?

    I wouldn't say that my family is dis-compassionate, but more like their compassion and tolerance is limited to the extent of their understanding of how debilitating our chronic pain can be.

    With depression, people often are resistant to the changes they need to make in life to get better, because its uncomfortable. This is something doctors classify as "pain avoidance". Basically an unwillingness to do the work to get better, because of the pain that is associated with it.

    When it comes to chronic pain issues though my doctors and therapists have taught me that when it comes to physical pain, if I am pushing it too far or overexerting myself to the point I am increasing my pain, then potentially I am doing more damage and not allowing my back to heal.

    Personally, my pain management doctor has told me I have a very high pain tolerance in comparison with his other cases. Having 28 trigger point injections in one session, that equals a lot of pain that is literally blinding. You know when the pain is so intense, all you see is white flashes of light.

    Many of my friends and family though think I have a low pain tolerance and that I should be doing more to "just suck it up", They don't realize that [B][I]with my medications[/I][/B] I am generally at a 4 on the pain scale... If I'm lucky on rare days it will get as low as a 2 with my medications and the right treatments. Just to let you know though a 2 is what I would equate with having a headache prior to my back being damaged.

    In the past 3 years and 9 months I've never been below a 2... [U]never[/U] had a pain free day, even with my medications. So I am pushing through the pain and "sucking it up" every day since my injury, even on the best of days .

    [I]Honestly, I think anyone who has multiple trigger point sessions would be an excellent candidate for working in an intelligence agency.[/I] Because they know what it is like to experience pain up to the point where you pass out. They know they can endure any amount of conscious pain, so torturing won't work... Sure they might talk under the influence of sodium pentathol or some other mind altering substance, but so would anyone else. [I]Besides, they have training now a days that makes interrogation under the influence of mind altering drugs unreliable.[/I]

    I used to cringe at the scene in the movie Marathon Man where they were drilling into a unanesthestized tooth. Now, I'm sure I could tolerate that, until I passed out.

    Posted 04-05-2010 at 03:03 AM by Myofascial Pain Myofascial Pain is offline
  3. Old Comment
    bullymom's Avatar
    Myo, This is an excellent blog. Uh oh, here I go flattering you again. Seriously, I could not have said it better myself. All of us have to deal with this issue to some degree. I'm lucky in that I have a sister who is in PM, so at least we can support each other and that helps so much.
    Take care,
    Posted 04-10-2010 at 10:46 AM by bullymom bullymom is offline

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