Cartoon by the fabulous Doug Savage, found here.
Heda asked this very good question in response to yesterday's post:
I haven't read Mrs Roosevelt but I already like her from what you've written. She sounds like a most sensible woman. And maybe she's answered my question. I've been pondering lately about whether it is possible to have both a severe chronic illness and hypochondria? Or maybe whether one of the symptoms of the severe illness is hypochondria?Well, people, what do you think? I'll share my opinion on the subject, but please add your voice to the discussion in the comment section below. If you are having problems posting, just shoot me an email with your comment (juliaschulia@gmail.com) and I'll add it to the post for you.
So. Here's my two cents: I think that Heda has correctly identified one of those fears that have been hiding in the background of my psyche ever since I became ill. To be honest, several other unpleasant suspicions regarding myself lurk in my brain and most involve the adjective "stupid". But we don't want to go there today.
While I may not have used Heda's well-chosen word hypochondria in my pondering, and it's spot-on, I've frequently wondered if many of my symptoms and aches and pains are, if not created -- then amplified -- by my hyper vigilance to my body ever since my struggle with autoimmunity began. Not that this increased attention to my health is without justification, however. For whatever reason or cause, my quality of life has been severely impacted by my disease. This I know without a doubt. But still I second-guess myself.
Sometimes when I have those dreaded it-must-be-all-in-my-head episodes, it helps to mentally sit myself down and do one of my trademark bizarre split personality exercises. Think BICJ, except she doesn't really come into play here because I wouldn't say these concerns would be ones that would occur to Bratty Inner Child Julia. But they would to a FFQJ. (A Frightened, Feeling crummy, Questioning Julia). While I'm not always successful, here's how I try to work through those overwhelming self-doubt experiences:
FFQJ: My 79 year old mother told me today that she had to climb down from her ladder to answer my phone call. She had been PAINTING THE HOUSE. After baking a pie and driving over to instill eye drops in her elderly priest's eyes. The woman has had breast cancer and a total mastectomy, bypass surgery with five grafts, a stroke, and was recently diagnosed with Parkinson's. (She really should not have been up on that ladder. But I digress.) The fact remains that my mother could run circles around me -- a 57 year old that is barely capable of taking a shower on her worst days. And here I sit feeling as though I have to push myself to put dishes in the dishwasher, or run a load of laundry through. And I have to sit down after only walking a few blocks because my hips hurt, and my knee hurts, and my butt hurts, and my foot goes numb. There's something WRONG with all of this. I should be the one running circles around her. I must just be a worthless woman who exaggerates all her problems as an excuse to lay around and do nothing. A person who concocts physical problems to justify her laziness.
Me: Girl. Listen up. It's time for an attitude adjustment so quit running around wringing your hands and focus here.
FFQJ: I can't! I have ten year's worth of stuff that I haven't done and it's all my fault!
Me: Oh, please. Don't add drama to the situation. Now let's look at this objectively, shall we? First off, would you feel better if Mom were in your situation and was not able to do everything that she wanted?
FFQJ: Oh, no! I love that Mom can run around with her hair on fire! I wouldn't take that away from her for anything!
Me: Well, of course you feel that way. The fact that she is up and running around may have been helped because you were there to change her mastectomy dressings, to help her with her lymphedema exercises, to encourage her through her heart surgery, and to stay with her after her stroke. And there will be more challenges ahead for her with her Parkinson's, and you will be there for her then, too.
FFQJ: I hope so. But, and this has nothing to do with Mom -- I feel as though I'm worrying and worrying over every little ache and pain. And tired spell. And rash. And cough. And...I wonder if any of it is actually real.
Me: Real? Real?! You want to know if it's real? How about your weirdo lab work, hm? Like the very positive ANA, the sky high inflammatory markers, all those autoantibodies floating around your bloodstream, the x-rays and MRIs showing changes in your spine? The biopsy that diagnosed your rash as an autoimmune disease? The tests that proved your dry eyes and dry mouth? You can't cause those things simply by being lazy.
FFQJ: I guess. But I spend so much time just laying around...
Me: And would you quit with the "I'm not tired I'm lazy routine" already? Tell me. Think back to when this fatigue really hit. What were you doing directly before that?
FFQJ: Working full time. And then I came home from work and did a zillion other things.
Me: Exactly. Your body may be what some doctors call "deconditioned" now, but that didn't happen until AFTER the fatigue began, not the other way around. You know this.
FFQJ: Makes sense.
Me: Don't you think that while it's true that you spend some time focusing on all the weirdo changes going on in your body, that you would feel far less anxious about your health if you had better answers to your questions? Do you remember shortly after your diagnosis you had very few concrete facts and resources, except that Sjogren's is incurable and progressive? That would make anyone freak out a little bit.
FFQJ: Yes, I think that's exactly it -- if I had a better explanation for what causes my autoimmune diseases and some idea of what to expect as I deal with them, I'd definitely feel less anxious and crazy about every little thing. Thanks. I feel a lot better.
BICJ: Woo hoo! It's all settled. We're not crazy and we're not a hypochondriac. This calls for a Butterfinger Blizzard! Let's go!!
Me: Who let HER in?
Yeah. That's usually the way my conversations go. What do you tell yourself when you begin those self-doubting sessions?
11 comments:
Julia, this is something I fight all the time. I feel like I don't accomplish anything and apparently that is what I based my self-image on before I got sick. Now I feel bad about myself because I'm being so "lazy". It's hard to accept the fact that you have to sleep two-three days after a visit by a relative. Then you have to do the laundry, clean up, etc. All we can do is the best we can do. No one in my life gives me a hard time about this so it's all me. I don't know how your followers deal with this if they have relatives, friends who don't understand and may give them a hard time.
Your inner dialog sounds very very familiar. Thanks for sharing, and keep convincing yourself it's not will power, it's an illness
Interesting how we tell our inner selves that we're lazy or somehow to blame when our fatigue has overcome our will to do.
Recently I attended a workshop on "mindfulness" . The presenter described depression as focusing on what has happened and anxiety as focusing on what could happen; being mindful keeps us in the present, helps us deal with the now, alleviating both my sadness about losing a piece of me to a disease and my worry about what it's going to become.
Being mindful is a daily goal and I feel more hopeful and appreciate where I am now, and more emotionally prepared for tomorrow. That "negative self talk reel" is always burbling below the surface, but staying focused on now, taking positive steps to deal with now and finding joy in my now keeps it at bay......well, most of the time : )
I understand you perfectly, Julia. I'm 58 and my Mom just turned 80 and we sound like you and your Mom, exactly. While my Mom has a spotless home because of course, she spring cleans 2x a year, mops every morning, never has a dirty dish in her sink, is constantly on the go,my home is all the opposite.
My guys are lucky if their meal is ready at night, or their laundry is done that week, and that would be all I've done all week. One part of me says who cares because I'm not well and I'm doing the best I can, but the other "Miss Perfect" part of me who's been brought up that no matter what, you must force yourself to do things even if you're not feeling up to it, feels very guilty and imperfect when I compare myself to others, and to my Mom, who can do it all, even at her age.
We're not hypochondriacs....we're sick and very afraid of getting sicker. We have a disease that overlaps with others, and evolves, so that everyday you get up, you don't know what type of day you'll have.....a manageable day, or one where maybe the paramedics need to be called. We just don't know, so we constantly check how our bodies are reacting.
Yes, yes, yes!!!
As always, Julia, you have hit the nail directly on the head! But it is no wonder we feel like "it's all in our head". How many times have we gone to our doctors for help or answers, only to get the feeling that they don't really believe us. Or that our symptoms are minimized. Or, and this is my favourite, they recommend you seek counseling. Because it takes on average seven years to be diagnosed with Sjogren's, this extended time period can really take a toll on us emotionally, never might the physical.
It is a bit of a double edged sword too, whether or not to be vigilante with new things that crop up or old things that don't go away or get worse. I used to keep a health diary, which ended up being more of a story about how sick I was. I had to end that practice. I was writing all day and forgot to work some living in there somewhere.
I know for myself, that when I have an upcoming appointment, I need to spend a lot of time preparing for it. If I don't think things through and come with my many lists, I am not making the best of the doctors' expertise and I will likely give the impression that it is "all in my head" anyway. So this once again forces me to take a long hard look at what is happening. Sometimes I look too hard! Once again making me too self-focused. Can't win.
As Nancy Joyce stated, I try to live in the present too. But sometimes the present just stinks!
Wow, Julia. This questioning yourself- I think it adds more suffering. I remember how frustrating it was to have my 90 + year old neighbor be able to run circles around me when I was first ill with systemic symptoms. Also, I would question the statement about it being progressive. Do you know this for sure? Good studies have not been done on the natural history of the disease!. Even if it is true for most people, does not mean that it must be true for you. Is it possible to get better? My personal take on this is yes, it is possible to get much better. I have a friend who has gotten much better via acupuncture, and was able to go back to work. She has not been sick as long as I have, but her response was pretty awesome. I started with the same acupuncturist, and 2013/14 was the first winter that I did not have a major dive into Sjogren’s oblivion (18 hours a day in bed, zero quality of life, awful GI etc) . For years, my flares have been incapacitating for months, usually starting in the fall and lasting into Feb. I was amazed that this did not happen yet again last winter. I have been successfully weaning prednisone for the first time since this whole thing started 12 years ago-- I think due to the acupuncturist. My skeptical rheumatologist has been amazed at my weaning success. We have been working on this unsuccessfully for years, throwing powerful medications at it over and over again.
I had already tried many biologics and TNF inhibitors, anything to help get me more functional. None has helped nearly as much as the acupuncture and Qigong. Note it was not easy to find an acupuncturist who was good, and an effective Qigong method. I tried many Qigong methods that did not help, and have made the rounds with many acupuncturists.
Another story: I had severe nausea and occasional dehydrating vomiting sessions with both pregnancies. The entire 9 (and 1/2) months. Toward the end of my first pregnancy , I was wondering if I was nuts, and had just trained my brain to think nausea? Well lo and behold, nothing like childbirth to provide a rapid cure. I had postpartum euphoria. I kept saying "I'm not sick!" repeatedly. Clearly, this was something physiologic that cleared from my body within a few hours of delivery. The nausea was a whole body experience. The experience of nausea, pain, fatigue is interpreted in the head, so always worth working that angle. That does not mean you created the problem via some buried emotional dysfunction—a common and unhelpful attitude in our culture.
I could go on and on about this topic, but I have come to the point of accepting what is happening, and being compassionate to myself. I already know I’m tough as nails. I have gone to work with incredible back pain after a spine injury, and gutted through that. I simply cannot gut through Sjogren's symptoms.
However, I do believe I will continue to improve, through combination of acupuncture, Qigong meditation and supportive lifestyle (food, exercise etc.).
It is not your fault, or mine, that we are sick!
I think it is possible...being overly "concerned" with ones symptoms. After the nightmare many of us went through to be diagnosed, is it any wonder?
My rule of thumb, wait it out...here today.....gone the next, nix it off as those phantom pings & pangs. Still happening a month out, have it checked out.
I struggle with this in a major way. I have been diagnosed 2 years, and am currently still working. I feel crummy most days, but not bad enough to really be "sick" if you understand what I mean. Then because I make it to work, people don't think there is anything wrong. Heck, I didn't even believe myself! I just had my eye doc do the eye stain thing because I was diagnosed from SSA and SSB only, which did not meet the full criteria. I just had to "be sure" I wasn't faking it, LOL!
What people don't see is that when I get home, I just crash - I have zero energy left. I don't want to do anything or go anywhere. I just want to sleep. which makes people think I am just depressed! I am not depressed, I am simply exhausted!
I just recently noticed that I really have no friends left. I don't know that there is anything I can do about it because I just can't do what I used to be able to do. Even this does not make be depressed, because I love to read, and books have become my best friends.
I have a secondary diagnosis of Trigeminal Neuralgia, which is probably a complication of the Sjogren's. The neurological aspect really worries me, on top of being painful. It weighs heavy on my mind all the time. I probably AM a hypochondriac!
It helps a lot to be able to touch base on this website and see that others struggle with the same issues!
hey I have the same person living in my brain! Oh its so nice to know I may be only slightly bonkers :)
Love this post! I have often asked that if myself. But I remind myself that my blood tests were positive , I got an upper denture in 2012 at the age of 39. Had I questioned more, I may have known why I was losing my teeth. Instead if learning months after.
I think this fear of being a hypochondriac cones from incompetent Doctors who didn't want to take the time to listen. One Dr. In particular made it clear she thought I was making a bigger deal than it really was. I was diagnosed 3 months after that and after I sought Dr. Who did listen...
I just remind myself of all of the above and then I'm good.
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