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Discussion in 'Lifestyle Management' started by SickOfSickness, Jan 25, 2012.

  1. SickOfSickness

    SickOfSickness Senior Member

    I'm frustrated that therapists don't understand this illness. I feel I have to tell them, because it's such a huge part of my life, but if they don't know me, they think I'm some lazy person who just doesn't want to work, or crazy person claiming I have some invisible illness that is so bad? I have 2 other diagnoses they would question too. They would think the emotional/psych problems are causing the physical. It's separate illnesses.

    Just wondering if they are rare, ones who can understand. I had one who had a condition (for a few years), so I guess he understood more than most, but still not what I hope for. I think it's hard to understand this particular one, unless you are close to someone who has it, or have it yourself.
    *GG* likes this.
  2. LilacGardenia


    Well, as a psych student I can definitely see where this issue would stem from. Therapists really aren't taught too much in depth science stuff (unless you deviated from or take on a more science-based path or psych program like I'm doing). Some of my friends that are in the B.A. psych program, get away with no biology beyond a high school level, biochemistry, calculus, etc. but they are great at handling things like relationship issues and helping people with phobias, etc.

    The science behind ME is also very new (and constantly being updated) so even if you are a world class scientist, you have to stay up to date with everything. Some of my psych classes are basically composed of you reading a huge textbook and memorizing it so you can spit up certain facts on the test. You can be a really bad people person or have little passion for the field, but still become a therapist if you have a good memory. I'm not saying this is true for all therapists, but it does happen.

    As with any professional, it's hard to relate to something you've never experienced. Having the academic experience learning about a disease and it's psychological impact on the victim is great, but experiencing it is the only way you can truly understand how it feels. Your therapist can't relate to it like you can, and that's with any disease. An oncologist that has never had cancer can treat a patient with their knowledge, but can't relate, just like a male obstetrician might be one of the best at delivering babies, but he has no idea what it feels like to be the mother-to-be. The same thing for therapists. While they can be great, you have to keep in mind that they have their limits when it comes to empathy, and not all of them are as science minded as you'd think. I think the best therapist to talk to about CFS issues would be a therapist that has research interests in it, has experienced it, or like you said, has someone close to them with it. It might also help to see a biopsychologist or a neuropsychologist since they have more knowledge on the science aspects of things like CFS and the neurological system, yet they're also trained to understand the psychology side of it that some physicians aren't as good at. I know some of the medical doctors I've been to are far from people people (like socially awkward/stereotypical nerd) and sometimes a bit cold.

    If you are christian or Jewish or anything, a pastor or rabbi, etc. can be helpful to talk with.

    Of course there is this board if you want to discuss something on here.

    All the best! :hug:
  3. Gavman

    Gavman Senior Member

    I think the problem is, alot of therapists are narrow-focused. There are great therapists out there who will be able to help you. Just sometimes gotta see a shit one or two as you look for a good one.

    Its all interelated though, and helping free your emotions and psychological traumas will help your body improve, as will physical therapy, diet, supplements etc. Regardless of genetics, we have the ability to improve on what is there. Or at least clear some crap away.
  4. Misfit Toy

    Misfit Toy Senior Member

    I have been to heaps of therapists. Some know about this illness, and some say they do but don't. I really don't think anyone can truly understand this thing unless it's touched them in some way. Unless, they or someone they know has it.

    My therapist gets it, but even then only up to a point. My last therapist; his daughter was crippled with lyme disease and he would make suggestions to me that were a little too out there. Meaning, "To meet people, you should do what you love and go skiing." But I can't ski like I used to as much.

    I think you can only expect so much and if the therapist really isn't meeting your needs, move on. Good ones are out there, you just have to keep searching.
  5. hurtingallthetimet

    hurtingallthetimet Senior Member

    like most ive seen sevearl doctors specialist in begining sent from one to antoher trying to figure out what was wrong...since i was a very busy quite healthy person my whole life until i become ill other than some depression it was crazy trying to figure out what was wrong...i thought id see a doctor or specialist theyed tell me on spot or with test what was wrong give me medication and id be better in a few months at most...i kept getting worse and worse..these illness have killed the active happy busy multitasker i was...who would want to live like this?

    it is very humilatiing...sad...depressing...hurtful and cruel when you see a doctor who doesnt believe in fibro/cfs because it is invisible../my hubby didnt even understand at first take awhile but now him and kids help out so much...ive read on the support groups about how badly people are treated for being ill with these illness and ive been treated badly also...its sad espically when one cant go to another doctor because of small town or cant drive whatever and stuck with an uneducated uncaring doctor...i hope you find if you havent already a great doctor...it took me awhile but i found a really good doctor educated and up to date on illness...whats helped me most is the pain medications the morphine though i get very sedated i cant get out of house and drive or alone becuase im afraid i will wonder off of course...but the morphine has helped me do little things again with less pain with the kids or if hubby is driving...its sad ive gone from being so active to not being able to take a walk with kids without morphine but i stay in pain and fatigue and grateful for the help from the doctor and medications..

    i have a great consuelour who has helped me and family alot..i think the conselour helped hubby to undersrtand the illness also and he has to drive me to regualr doctor so he hears how bad these illness are...
    its hard to have these illness i wish there were more people who could advocate for us...and be heard...i dont think anyone would treat someone with ms or lupus...not saying one is worse than others but trying to make a point..they wouldnt treated someone with those illness that can be invisble with such cruelity...im mostly in house now...the stress and anxitety from when i do have to go shopping or run errand is alwful..i try to hide it but afterwards its horrible the pain and fatigue worse by doing anything...poeple just dont understand how much we go through silently though its invisible doesnt mean that its not real...i hate when i hear on boards of someone being treated badly with these illness because i know how it feels....to be made fun of and for someone to say its in a persons head etc...its just plain cruel and horrible...if people knew how much pain and fatigue we go through and then that we have to push on and do things that will only cause more pain and fatigue....as i said hubby and kids help alot...i hope you have or get some help also...i use to try to do it by myself i had such hate for myself for being ill with these illness...for being so ill i couldnt do much and felt i put so much on family...i cant do what i did a few months or year ago...but sometiems i have to get shopping or prescriptions or take kids to school....little things it might sound like to some but for me its huge...and afterwards is so hard....people are so uneducated about these illness..people would prasie someone with antother illness who might be in same pain as us for doing something..but with people liek us as ive read from otehrs its like it has to be in their heads or they wouldnt be out going to doctors or getting food or whatever...but someone with another illness is a hero and brave for it those with fibro have been treated like crazy for doing it.....what do pepole expect? people have to go doctor and dont always have someone to take them etc..they have familys and have to do things for them...its like because fibro is invisible its shunned...if people knew how much pain and exhaustion we go through and how brave we are and how much energy it takes to just get up they would be very surprised how brave we are....hopefully more testing will be done...or something...

    just a very sad illness
  6. Dreambirdie

    Dreambirdie work in progress

    N. California
    Yes, there are therapists who are capable of understanding the issues that those of us with chronic illness have. I know this from personal experience, because I have consulted with 2 of them in my life and know of 2 others who are acquaintances of mine. I was also trained in this field, but never got to work in it due to my own illness.

    In order to find a therapist that is right for you, you will have to put out some effort to define exactly what you are looking for, and what kind of therapy are you interested in doing, (CBT, psychoanalytical, transpersonal, humanistic, process oriented, somatic, etc.) If you can find someone who works with chronic illness, of course that is a big plus.

    It's good to interview every therapist that you would like to consider for at least 15 minutes on the phone, with a list of questions that addresses your needs, prior to jumping in to being their client. Open-ended questions are best. Most will give you this time on the phone, and if they don't, then I would cross them off the list of possible options.

    The clearer you are with EXACTLY what you want from a therapist, the greater your chances of finding it. Good luck to you!

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