Secondary Benefit from Illness

Discussion in 'The Watercooler' started by Josie, Jun 18, 2009.

  1. Josie

    Josie Active Member

    I am bothered by something difficult child 2's therapist said today. difficult child 2 is doing intensive exposure therapy for her Obsessive Compulsive Disorder (OCD). Her therapist suggested that she is getting a "secondary benefit" from being sick and that is contributing to her being in bed all of the time.

    While I agree her Obsessive Compulsive Disorder (OCD) is contributing to her being in bed, I do not think she likes having no friends and getting attention for being sick. A lot of the attention she gets is not positive. To me, this secondary benefit implies an assumption that there is nothing physically wrong with her any more, if ever.

    Before she had this chronic headache, she was an active athlete who was good at volleyball, swimming, and gymnastics. She used to always be tumbling in the yard until she started getting headaches from doing it. She was popular in school. She got good grades. I just don't think she would think being in her bed all of the time was a "benefit".

    What do other chronically ill people think about this?
  2. flutterby

    flutterby Fly away!


    I think it's possible that it's safer being in bed because then she doesn't have to face the world and her anxieties. I wouldn't go so far as to say it's because of attention. I would think it's more of an escape or security blanket.

    I'm sick. I almost never feel good. I have chronic and intense headaches, pain pretty much all over, severe fatigue from the littlest outing, etc, but I couldn't stay in bed all day. Even if my body is screaming for it, I just can't do it.

    But, I also can't speak for another. Everyone handles it in their own way.
  3. ML

    ML Guest

    hogwash. There are "benefits" to everything if you want to look at it that way. Maybe the psychiatrist didn't mean it in a bad way and didn't mean to dismiss the reality of difficult child's illness.

    Hugs, ML
  4. flutterby

    flutterby Fly away!

    I wanted to add that I don't think it implies there is nothing physically wrong with her.

    If she has anxiety, maybe she is afraid if she does X, Y or Z, she will get a headache. It's possible that she has made her world very small to avoid not feeling well.
  5. Josie

    Josie Active Member

    That's kind of what I mean about her Obsessive Compulsive Disorder (OCD) affecting her being in bed. She has anxiety over germs, etc. We are working on that part of it. The therapist comes to the house for 3 hours 2x weekly. We just starting working on this aspect of her Obsessive Compulsive Disorder (OCD).

    She is up for 3 hours at a time with her tutor and the Obsessive Compulsive Disorder (OCD) therapist. She gets up to eat and run occasional errands with me. Sometimes, she will come out of her room to be social with the family or her sister's friends. She took a sewing class last spring every week.

    The tutor and the Obsessive Compulsive Disorder (OCD) therapist started in April. She says this is too much for her so she can't do anything else.

    So I don't disagree with the idea that she is anxious and that is keeping her in her bed. I just have a problem with the implication that she doesn't really feel bad.
  6. flutterby

    flutterby Fly away!

    I don't doubt that she doesn't really feel bad. But, keep in mind that taking her out of her comfort zone is going to make her feel bad, too. Trying to figure out if she's feeling bad from her chronic illness or from anxiety isn't easy, I'm sure.
  7. Josie

    Josie Active Member

    Yes, I've been telling her that her anxiety makes her head feel worse and if she can get that under control, she will feel better. Even if her head still hurts some. If she can go out of the house without feeling germy, she will only have her headache to cope with and not the anxiety.

    We are attacking from all angles. Lexapro (3 weeks so far), Obsessive Compulsive Disorder (OCD) CBT/ERP therapy, and treatment for her chronic illness. We've tried various migraine preventatives at times, but we are waiting to try again until she is at the right Lexapro dose.
  8. ML

    ML Guest

    You are doing everything you can mom. She is a lucky girl to have a warrior mom like you!
  9. susiestar

    susiestar Roll With It

    I totally get what you are saying. I get very POd when the docs tell us Jessie needs to "just walk it off" when her knee is swollen up more than twice what the other knee is. Or when her back is so incredibly tight with knots that it hurts her to even gently rub them. (I have tried all sorts of massages, and finally figured out a routine that seems to help IF she is not too tender to be touched.)

    The docs don't see her wake up with tears in her eyes, or watch her do anything with that set to her jaw that means it is taking up all of her resources to pretend to enjoy anything through the pain.

    Our kids do not choose this stuff. They also do not enjoy it.

    You may find that the lexapro helps the headaches. Some people respond to it as a migraine preventative.
  10. Marguerite

    Marguerite Active Member

    For some reason doctors seem to say thisstuff far more about kids. It really gets on my nerves. I HAVE had a doctor (a pediaitrican, interestingly) say the same thing about me - he told me that I had chosen to have thischronic illness as my way of optiong out of having to achieve in life to the best of my abilities. "YOu're an intelligent woman," he told me, "and tis illness is your way of opting out of life's responsibilities."

    He was way wrong - I later put it in a letter to him that by kis logic, my preferred sexual position would be standing up in a hammock, because living like this is NOT easy in any way. I have more hurdles to overcome, not fewer.

    HOWEVER - in my obsefvations of chronically ill people, there IS a problem with kids and with husbands, when they get catered tobecause of their illness. It is what we do for family members who become acutely ill - we care for tem. The difference, when the condition becomeschronic - you can no longer afford the luxury of lying around in bed because life is moving on and not waiting for you. You are still unwell but you have to drag yourself out of bed and go chasing off after Life, as fast as you can manage it. Your objectives may have to change - you can perhaps no longer be an Olympic sprinter through life, but can use other aids to help you keep up and catch up, or find something else you can do, within your limitations. You have to LIVe while you're waiting to recover. You can't just put a "pause" on your life, you have Occupational Therapist (OT) get on with doing the best you can with what you've got left.

    So while I see this "secondary gain" rubbish as a handy cop-out by some doctors, they get away with it because, in some cases, there is some truth.

    To shut these idiots up, the person needs to get on with living. Rest when your body says you must, but at other times - get up out of bed and DO something. If sunlight causes headaches, then go for a walk after dark. keep studying, keep extending the mind. Work the mind. Find courses which, if necessary, can be done part-time or by correspondence.

    Make a large poster to hang on the wall. Inscribe the words "SOLDIER ON". That has to become the motto.

    THat is not to say she isn't really ill and needing to rest at times. She should be able to rest when she needsto, without guilt. But she needs a reason to get up and get moving, because otherwise inertia creeps in, especially if you're there to provide for her every need.

    I had to soldier on because I am a mother and I haven't got the luxury of having someone to wait on me hand and foot. Kids don't understand when mummy is too ill to get dinner. They just scream for food. I HAD to get up and feed the kids (and do other things) and found ways to manage. Meanwhile I was meeting people who DID have the luxury of resting whenever they wanted to. Who was functioning better? I was. I was more tired, in more pain, but I was achieving more. Long-term, who had the better prognosis? Again, I think I did, because if/when I had 'good' days and was able to enjoy life a bit more, I was ahead of the game because I had already been doing more and felt better about myself emotionally, for what I could achieve. I had confidence in my abilities.

    Someone who is stricken with a chronic illness initally wnats to go to bed and rest. It's natural. For a lot of conditions, it is the best thing. Initially. But if you stay in bed and wait until you get better, you may lose ytouch with hoe "healthy' feels, and not recognise improvement as it sneaks up on you. And even if you don't miss it - let's say 2 years passes and you're still no better. What could you have managed, in those 2 years? Let's say you recover at the 2 year mark. If you have been in bed for 2 years, you need rehab to get your body awake and moving again.

    "Secondary gain" is, I think, over-rated in terms of just how much people use a situation. You DO need to keep the issue in mind, but only peripherally. As carer, all you need to do is encourage your child to do what she can each day, within her limitations. Give her hope in a future by ensuring she keeps as active as she can, mentally and physically. Her rehabilitation should start now. Don't wait until she is declared well.

  11. nvts

    nvts Active Member


    hahahahahahaha! That was've officially started my day off on a great note! OMG...the visual...

  12. DaisyFace

    DaisyFace Love me...Love me not


    I have also heard Dr. Phil say that people get a "benefit" from these types of conditions...

    Well, I suffered from severe IBS for many years. Agonizing stomache pains. Trouble eating. Sick and tired ALL the time. It was awful! It dominated my whole life. And even though I knew full well that stress and anxiety was one of the "triggers", I couldn't get ahold of myself to make it stop.

    And there was Dr. Phil saying "As soon as you figure out what your payoff is, this condition will disappear in a snap."

    Well, I never could figure out any "payoff" or "benefit" to being in agonzing pain and being stuck ion the bathroom for hours on end....

    And then, I tried to think about it from a different direction. Why was my body doing this is repsonse to stress? It turned out that the answer was simple...

    My body was doing this in response to stress because I was (In Marg's words) "Soldiering on". No matter how hard, scary, stressful, aggravating the situation, I was forcing myself to handle it--deal with it. And I as buring the candle at both ends trying to handle everything that life was throwing at me.

    And when I got sick--I was down for the count for several hours. I began to think that perhaps IBS was my body's way of telling me that if I don't give my body and mind a chance to relax, to step back, to rest--then my body was going to do something so drastic that it would FORCE me to stop, if only for a few hours at a time.

    So now, when I feel that "IBS attack" feeling start to stir up--I go and take a small break all by myself in a quiet area.

    And I have not had a non-food stomache incident now in a very long time, despite my continued stress.

    Perhaps a similar thing is happening with your daughter...? Is her body and mind forcing her into bed for a "break" because she is not willfully letting herself relax?

    It was certainly the case with me....


  13. Marguerite

    Marguerite Active Member

    Daisy, taking a break is a good way of soldiering on, but more effectively.

    Learning to listen to both your body and your mind, and what it means TO YOU - is the best thing you can do.

    Back when my PTSD first reared its head, I was sent to a psychiatrist who specialised in it. I was also trying to get physically fit after having difficult child 3. I had found a healthy muesli recipe when still in the hospital and asked the dietician for the recipe. So back home, I began making this muesli.

    Then about a month after I started seeing this psychiatrist, I got all the symptoms of a gastric bug. When I had trouble eating my muesli, I put the problem down to the milk I was having with it, since the gastric symptoms had been so extreme it was liekyl I had lost all lactobacillus form my GI tract. So I stopped all milk and felt better for a while.
    Then I found I was OK with milk in my coffee. So I drank a glass of milk. I was fine. I had plenty of yogurt so I was probably loaded back with lactobacillus again. I tried my muesli again. The gastric symptoms returned.
    THis pattern repeated.

    My psychiatrist's response - "the muesli was one you first had in hospital after the baby, and your trauma is directly related to the difficult birth, plus other things. You could be getting sick when you eat the muesli as a way of rejecting the birth and the baby along with everything associated with it."

    Typical bloomin' idiot of a shrink - it took us a few more years to work it out, but the problem is very simple - I can't eat rolled oats. And most muesli is made with rolled oats. Chances are there is a gluten problem too. But since then I have modified that muesli recipe and found that if I base it on rice, I'm OK. If I eat ANY commercial muesli with oats - I'm sick. Just as I was before.

    So instead of it being a conditioned response and psycvhological cause, there was a purely physical cause, aggravated by me eating muesli constantly, several times a day, in my effort to lose weight, and thereby developing a sensitivity to a common antigen.

    So sometimes the mind is at least involved, but not necessarily.

  14. Nomad

    Nomad Guest

    I have found that generally physicians see problems as stemming from physical causes and psycholgists often see problems having a psychological foundation. However, it has been my experience that many times (not always) the two disciplines can work very well together in an integrative way and in my humble opinion someone who is open minded and truly wanting to get better rapidly, might be open to exploring both worlds even simultaneously.
  15. DaisyFace

    DaisyFace Love me...Love me not


    I hear you! I went through all that stuff at first with my stomache troubles, too! Aren't food issues the worst? I had visits with so many specialists. Food lists. Special diets. The complicated theories....(perhaps your mind associates food with?)

    Turns out, I can't eat rolled oats, either.....nor vinegar/vinaigrettes.....tomatos/sauce.....salt. That's OK. I can alter my diet.

    But the stress component? That's where I struggled the most....and the harder I tried to "fight" the stress, the worse it got.

    FairlyOddParent described her daughter as being a good student, lots of hobbies, very active with friends/sports/clubs...

    It made me wonder whether she is a "Type A" personality that is trying so hard to excel at everything, that she, too, is trying to "fight" her condition....and thereby unwittingly exacerbating it. The harder she pushes herself, the more her mind has to take drastic measures to force her to take a break.

    Hopefully, she will find some relief soon!