Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Documentaries for family/friends?

Discussion in 'Information and Resources' started by bananabas, Sep 8, 2015.

  1. bananabas

    bananabas Senior Member

    I would appreciate some help compiling a list of documentaries and other informative material that my family/friends could use to understand my condition. I have tried showing them articles from medical journals but they do not understand much from those.
    L'engle and alkt like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

    Hi @bananabas

    I have compiled a list for just such a reason.
    You can find it here: http://forums.phoenixrising.me/inde...ction-of-various-me-videos.39007/#post-624260

    I believe there were two errors in links that I did not catch.
    Canary in a coalmine: https://www.youtube.com/IW11Je8pm20
    Dr Anthony Kormaroff:

    I also compiled a list of material that is written (not video) directed to lay people (not studies) but it refers to work being done by biological science in ME in easy to read press releases for the general public.

    You can view that here: http://forums.phoenixrising.me/inde...pwme-get-accurate-info-out.38886/#post-621915
  3. minkeygirl

    minkeygirl But I Look So Good.

    Left Coast
    Others here will know more than these two I know off the top of my head. Check out YouTube also

    Canary in a Coal Mine. I Remember Me.

    Another I like is w British one. Search YouTube UK myalgic encephalomyitis.
  4. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
  5. Has anyone found a resource that can help friends and family understand HOW our symptoms create secondary and tertiary problems in life. Disempowerment, poverty, needing to be dependent on others, loss of choice over where we live, if we date have social interaction, inability to work, loss of dreams, loss of independence, feeling alienated. I don't think my family can sympathize or relate to any of these things.
    They don't understand why I'm hurting and why my situation isn't as simple as they believe it is. To them, I need to stop overcomplicating and just accept that despite being able to live alone physically, financially we can't afford any other option but to live together and be treated inappropriately for the circumstances.
    I'm able to live a more simple, positive life when I'm alone, but financially there's no other option. I feel like my parents just don't want to accept the responsibility and burden of thinking about my situation any more than they have too. Like looking the other way when they see someone who is homeless. They don't believe they can do anything about the problem so they look the other way as much as they can. It's dismissive, divisive and alienating. The act of being impassive and disengaged sends a message to me, that my parents have given up. When I have a medical problem or lose my insurance, they say- "uh huh, yeah, well I need to get back to Jeopardy, but you'll figure it out you always do."
  6. aaron_c

    aaron_c Senior Member


    I know not everyone has the mental flexibility required to "put yourself in someone else's shoes." However, for people who are well enough to do so I would think that an accurate understanding of our symptoms would more than imply all of the other difficulties we face.

    Does your family understand that your illness involves more than just "being tired all the time?" A week or so ago there was a good thread on how describe ME/CFS. I like the just climbed up a tall mountain explanation.

    If their problem is that they don't believe ME/CFS to be real or they believe the problem is in your head, there are a number of resources and articles you might point them to...although many old dogs won't learn new facts at this point.

    Something easier said than done would be to start a conversation with a family member by listening to how they view your illness before you try to educate them. Often people are much more open to seeing another point of view in the context of a true dialog rather than a lecture. Probably you are aware of this already and know that it will not / did not work in your particular family situation--but it seemed worth mentioning, just in case.

    But if none of these are the problem (and I think that just leaves a stubborn bunker mentality) then I'm not sure what the solution is.

    I hope something improves for you soon.
  7. *GG*

    *GG* senior member

    Concord, NH
    This might be a good documentary:

  8. Snowdrop

    Snowdrop Rebel without a biscuit

    Hi @sparklehoof

    I'm sorry to hear that your family is less than supportive.
    It's a good question you're asking. Some people are more intuitive than others when it comes to understanding the how one thing can affect so much else in so many ways. I don't have a direct answer for you but you might want to check this out: https://themighty.com/category/disease/chronic-fatigue-syndrome/ There may be something in one of the article here that is useful.

    Otherwise I would suggest that your question is not necessarily specifically tied to ME but can be a problem in general for those with chronic illness. One example is (back in the day) no healthy person going about their business ever gave any thought to people in wheelchairs and their need for accessibility and probably many thought making a fuss about this was just so much whinging but I'll bet women who had babies in strollers started to catch on to the inaccessibility of areas. It's so obvious but people are busy with their own thing and don't take time to consider (though family members certainly ought to). They need to be shown.

    There may be literature out there on this point--how life is altered due to chronic illness--if I come across anything I will post it here but at the moment cannot think where to find such. :hug:

    Sometimes people come to understand in time in what seems like out of the blue--it could be they are having a hard time processing all this--not an excuse for them just a possibility.

    The best we can all do for each other is to continue to advocate for all our sake for better treatment, more research, education etc.
  9. Thank you all.
    I love my family and am grateful that they now accept the reality that I am sick (it's been since mid-March 1999). My parents have offered me a bedroom of my own which was very generous and I'm extremely grateful. My SSI/SSDI has, like many of us turned out to be below the poverty line and also like many of us it's difficult to be sick and trying to live a healthy lifestyle on that budget.
    I've realized that I'm over stimulated when I'm with my family. I also feel like they regard me as "other". There's a feedback loop that inevitably recurs no matter how much I try to break it. I haven't lost my desire to want more from my life. In some ways, I think my family tunes me out-they think I'm overly emotional (which I definitely am when I'm around them). They say that I plan too much that I over complicate, and they may be right, but I also believe that my dad plans to procrastinate and my mom is impulsive. I used to be more happy go lucky, but now it's different. I'm not a parent, but I would think it's similar except you plan for yourself like you would plan for your baby- you want security and stability, money in the bank, manageable finances, health insurance, a reliable car, family or friends/babysitter/dr support, to know if you're going to a child friendly restaurant before you get turned away at the door, and the diaper bag.
    My family members agree to sweep things under the rug much more than I do and this is one of the many things that causes my stress level to increase when I'm with them.
    MeSci and Valentijn like this.

See more popular forum discussions.

Share This Page