How to Stay Sane While Waiting for a Diagnosis
March 4, 2010
This week I have the distinct pleasure of putting Vermont’s universal health care system to the test.
For a few weeks now, I haven’t felt exactly right. I can feel my heart beating harder than it should, my chest hurts, my cycles are all screwed up, and I feel like I’m breathing through a straw… at 10,000 feet above sea level.
For the record, I’m not usually a hypochondriac. In fact, I go to great lengths to avoid seeing anyone in the medical profession, for reasons I won’t get into right now. If anything, I have a tendency to downplay the significance of my symptoms. But I have a new theory that EVERYONE becomes a hypochondriac while waiting for a diagnosis. The degree of paranoia is directly related to the amount of time one has to wait.
I wonder if it was always like this, or if this is a relatively new phenomenon, created by easy access to too much information?
For instance, during my first appointment, the doc said it MIGHT be anemia… and we had to wait on the lab test results. Now I will say that I didn’t have to wait at all to see the doc (no hours spent in a waiting room), and the results were back in less than 24 hours. So far, so good with this Vermont system.
At this point, I have no idea what’s going on. The doc did tell me my lungs are perfectly healthy, but they are working overtime to compensate for something else that is preventing me from getting the oxygen I need delivered to… well, everywhere in my body. That “something else” is either a blood issue (hence the anemia guess), or a heart issue.
So, what ELSE am I going to do while I wait? I Googled “anemia”. Even one hour is an ETERNITY, when you have access to this kind of stuff:
Google Health *Â Mayo Clinic * Web MD * Wikipedia * Women’s Health
TOO much information! Knowledge may be power, but this is just sadistic. Did one of those say there are 400 types of anemia?!
The thing about having too much information is that you might as well have none at all. You can’t process it in a useful way… it is meaningless. (Kinda like when the forecast says, “50% chance of rain”… “it might rain, or it might not” is NOT helpful.) And, in the absence of useful information, we tend to make up stuff… stuff that’s probably much worse than anything reality will throw at us.
After Googling, I Tweeted and Facebooked for a while, trying to vent a little of the angst of not knowing (apologies to my Twitter and Facebook friends who had to read my rambling streams).
Then I started to worry about whether my “affairs” were in order (as in life insurance, not adultery).
Then I started to panic because I’m even thinking about my “affairs”.
And then I joined Hunter in his fort to listen to Lemony Snicket’s Series of Unfortunate Events, on audio.
This seemed to do the trick. Immersing myself in a child’s world removes me from the actual world, and any of its various and sundry grownup affairs.
But I can’t stay in the fort forever.
Can I?
Well, I got the lab results back and, despite the fact that I am now an expert in anemia, it turns out I am not anemic after all. So… yay for healthy lungs, and yay for healthy blood, and not-so-yay for the fact that I’m still waiting for a diagnosis.
Step Two takes place today, and will consist primarily of X-rays. Then, depending on what we learn from those, I might be visiting the EKG tech person. It sounds like I may be waiting a few more days, at least.
Not-so-yay for that.
Maybe by the end of today I’ll have a few more potential conditions to Google (probably not a good thing). By this weekend, I’ll be a full-blown hypochondriac!
Or, I may just stay in Hunter’s fort full time.
Anyway, I still don’t know… and it drives me nuts. But I thought I’d share the ups and downs of this little journey with you, so you’d know where I’ve been, what I’ve been up to, and why I’m not blogging much these days. I guess you could say my heart and mind are elsewhere right now.
What about you?
Have you ever been in the “waiting for a diagnosis” phase? If so, how did you stay sane?
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Phew! I’ve been there, although not in the same situation as you. Mine was less serious, but still up there, because my stomach was all messed up. This was when I was around 16.
I used EFT. I’m the EFT preacher. I’m telling everyone about it, but it has really worked wonders for me.
Another thing that helped me was to just accept the feeling in my body where I had the angst, anxiety or whatever feeling you have. So often we try to hide from the feeling, which makes it worse.
Also, there’s nothing like a good movie
Henri Junttila´s last blog ..Ebook and Product Creation: How to Eliminate the Problems You Will Run Into
Hey, Henri! I’ll have to look into this EFT thing… particularly since I have the EFT preacher IN THE HOUSE!
I believe you are right, that trying to hide from the feelings, or pretend they aren’t there, really only makes it worse. I’ve been seriously medicating with movies (and books) lately. I’m on quite the marathon!
Hi Lisis…
You don’t even know if/what it really is yet… so by googling you’re assuming something negative.
I remember when I used to do that with medical things – something I quickly found out… if you google medical symptoms you will pretty much always get some horribe condition coming up!
You’re into meditation right? Take it as an opportunity to accept and let-go of the feeling of anxiety know that it’s content is emptyness.
I’ve had my heart do stange things before – it can be something as simple as a dietry dificiency or caffiene related. I have a friend who recently began suffering from random heart palputations, apparently it’s just some benign condition which he’ll have for his whole life and has no affect on his overall health.
Cheers,
Rich
Rich´s last blog ..Creating the best to-do list you’ve ever made – pragmatic future design
Great points, Rich, all of them. I really don’t know what it is, and by assuming (and googling everything under the sun), I pretty much just make the anxiety worse.
Odds are, that this enigma has a very simple, treatable solution. I considered waiting until it was all resolved to decide if I would mention it at all. But I figured there is probably some benefit to sharing these thoughts and feelings as they happen… while I’m still immersed in the wait. Maybe someone else is also going through it, and will be comforted by knowing they are not alone. I’m assuming this sort of angst is probably fairly common (but, there I go assuming again!).
Oh yes my dear, I know how you feel. I waited for a correct diagnosis for many years. Eat more fiber, its IBS, its the meds you are on, its just stress, you might have celiac disease, but I doubt it…..after a few years of this I took my doc by the collar and said “figure out what the hell is wrong with me!!” so he sent me somewhere else and lo and behold I got my diagnosis of Celiac disease. I was very frustrated and stressed about it. You just “know” something isn’t right and its even worse if someone is downplaying it. But once I got that diagnosis it was like “HA I told you something wasn’t right!!” and was on my way to recovery. Hang in there Lisis, someone will figure it out. The worst part is the waiting/not knowing.
Hey, Charity! You’re exactly right… I think the worst part is not knowing. Part of the reason is, like you said, the downplaying the docs do: “It *could* be this, but probably not, since you don’t fit the profile.” So then you are left feeling like you’re really just crazy, or making stuff up, or being paranoid, or melodramatic.
To be fair, this doc hasn’t given me the runaround, but we went through it with Hunter’s surgery mess in Austin. We knew, good and well, something was WAY wrong… and the neurosurgeon kept playing the, “What do YOU know, you’re just a mom, and I’m a BRAIN SURGEON” card. Of course, when his screw up had to be repaired, he wasn’t singing that tune.
In this case, I’m not certain something is WAY wrong. But something is definitely, suddenly different… and I’d like to know why. Maybe this afternoon I’ll have a better clue.
My expert medical opinion is that you stay in the fort with Hunter. Doing anything else just makes you worry, and that just makes it worse (whatever “it” is). Staying in the fort relaxes you, takes your mind off of it, and helps your body heal naturally.
Besides, if it is something serious, where you might actually need to have your affairs in order, then you’ll realize just how precious that time in the fort is, both to you AND to Hunter.
Jay Schryer´s last blog ..What to Eat
I believe I’ll heed your medical advice, Dr. McSchryer. I can’t possibly go wrong with distraction, relaxation, and spending every possible minute on the stuff that matters most to me.
Plus, it’s about the only way I can still trick this kid into snuggling me!
When faced with things like this, I recite the Serenity Prayer. It helps me to see what I can do, and clearly shows me what I have to allow God to do. I think medicating with movies and hanging out in the fort are good ideas. Please keep us posted!
Hey, Trece!
You know, it’s interesting… I was writing a post recently about how I “managed” stress in a non-medical situation, and one of the things I did was to create an actual list of the things I *could* control, and the things I could do nothing about. I quickly got to work on checking off the items on the first list, and set the second aside for a while.
By the time I got to the end of the list, I realized that more than half of my “stressors” were gone (I had dealt with them), and that the remaining list consisted of items I had no control over.. I just had to wait and see. And I felt a sense of relief, knowing that I had done all I could do, and it was out of my hands for a while.
Perhaps I’ll make another list now.
My unexpert opinion? Worrying over this will create unnecessary stress and anxiety on a body (and mind) that *might* be going through something.
Here is something I read and shared on my blog. They’re my thoughts exactly.
Never borrow from the future.(If you worry about what may happen tomorrow and it doesn’t happen, you have worried in vain. Even if it does happen, you have to worry twice.)
With that said, please spend these days while in limbo just enjoying your life as it was the day before any of these symptoms started. If you need to keep your mind off things, immerse yourself in anything that will bring you joy, such as hanging out in the fort, taking walks that use all your senses (hearing, smelling, seeing, etc.), anything that absorbs your attention…but no more googling medical conditions, you hear me?
Take care of you!
Suzanne´s last blog ..Quote to Reflect Upon (Mar10)
Haha! You got it, doc! Note to self: improve diet and exercise, spend more time in the fort, and STOP GOOGLING imaginary medical conditions.
I like the multi-sensory experience advice. You must be in cahoots with Mother Nature because, contrary to all probability, today is a beautiful, sunny, Spring-ish day. Perfect for a stroll through this cute, little village.
I definitely don’t want to spend my time worrying. It’s interesting to note, though, how quickly a mind shifts from abstract goals and day-to-day things, to very immediate and present feelings. Also, I keep having all these totally random thoughts about unrelated things, like Kamikaze pilots, and commune kids, and the fact that the guy from Out of Africa (Denys Finch Hatton) was just as involved with Beryl Markham as he was with Karen Blixen… see what I mean? Random.
Maybe I’ll quilt together a post with all these little pieces of trivia that are floating around in my brain. It’s almost like my brain is making it’s own “movie” (distraction technique). I find this whole thing intriguing, really.
For me, immersing myself in admiring nature makes my mind quiet down. Also helps to keep me in the here and now. Nature is calling you outside to play!
Funny about those random thoughts. Your brain is definitely trying to distract you.
Suzanne´s last blog ..Quote to Reflect Upon (Mar10)
Suzanne, I love this quote, “never borrow from the future“. I think an ex-coworker shared it with me, and her Norwegian grandmother shared it with her. Thinking about this quote is a good way to put worrying in its place (even if one can’t stop worrying entirely). Thanks for sharing this!
You’re very welcome.
I’m not a worrier, however, I actually feel some distress when those I care about can’t calm their inner worrier. I usually try to bring out something like this to shift the notion of worrying around a bit, hoping that it will indeed help them to see the futility in doing it.
Suzanne´s last blog ..Quote to Reflect Upon (Mar10)
Please see a top naturopath! So many of today’s health theories are wrong! I see Dr. Richard Maurer here in Maine. He’s helped my son get over IBS, my husband lose weight and avoid diabetes and myself gain strength. Bone broth, cultured foods like sauerkraut or kimchee…great book to read, Nourishing Traditions. So many of our problems stem from our second brain…the large intestine..not functioning correctly.
http://www.coastalnaturalhealth.com/
Hmm… you mentioned this on twitter, too. I must admit, I know nothing about neuropaths. I’ll have to get Suzanne’s permission to Google it (maybe she’ll make an exception to her rule!). Did you say “bone broth”? I have much to learn about all this.
Ha! Your new prescription for mental health treatment:
Googling medical conditions = not adviseable
Googling natural treatments = only after a diagnosis
Googling medical practitioner alternatives = no more than 2 hours per day
Suzanne´s last blog ..Quote to Reflect Upon (Mar10)
You’re on the money in regards to TMI being a problem. But its also good, especially when you can force a lazy doc to expand his thinking. I blew one guy away when he said my mother’s heart rate was too high, and I asked ‘what are the effects of tachycardia?’
As for staying sane, slow, deep breaths does it for me. And not believing ANY conclusions that I reach in the middle of the night.
See? That was my thinking too (or, at least how I rationalized the obsessive Googling)… that I’d be able to stay on top of things and keep the doctors “honest”. I figure I’m my own best Patient Advocate, right?
But still, limits. And I love the advice about middle of the night conclusions!
Slow down, breathe deep and spend as much time with Hunter as you can (children are incredibly therapudic). And let us know how it goes.
Sanford´s last blog ..LOVE IN TIMES OF STRUGGLE
I’m with Jay, just stay in the fort.
I have been in your position before but it was nothing compared to waiting to hear whether or not the doctors had gotten all of the cancer from my Mum’s bowel when they operated on her. It was a very tough time. The way I coped was through distraction. For the record, they did and only last year, Mum was out of the cancer danger zone, meaning she no longer needs annual check ups.
Hope this all sorts itself out soon, Lisis. Big hugs from me.
Sami – Life, Laughs & Lemmings´s last blog ..Random Acts of Kick Arse – Passion
Lisis, I can so relate to this!! I had a little ’scare’ last year, and all the waiting was tortuous. I did learn a TON about various ailments online that I might have had, none of which I actually did, and I managed to totally annoy my doctor with all my ‘I read this on the internet…’ type questions. The funny thing is, as I read about accompanying symptoms on the web, I would start thinking I had those symptoms too, even though I hadn’t thought of them at all before. So although I love the power of having this information at our fingertips, if anything can make you into a hypochondriac, it’s reading about symptoms!!
Anyway, take care of yourself. Hopefully it is just a reaction to that cold Vermont air??
Lisa (mommymystic)´s last blog ..Interview with Jan Lundy: What is Women’s Spirituality?
Dear Lysis,
Although I don’t recall living an experience like this regarding Health, I have been in some stressful situation where I didn’t know what would be the final outcome…
At that moment I realized that I couldn’t control that situation and that I should leave this in hands of that Powerful Guy that some call Random, Allah, Cosmos, God, etc…
After “delegating” that responsibility, I could focus totally in the present. The best thing that happened was that everything went perfectly. I really did a smart decision when “delegated” the control of this situation to the Big Guy…
Take care, Lysis, all the Best!
Boris
Boris´s last blog ..Two halves don’t make a whole…
Lisis,
O Dear Me: what are we ever gonna do with a gal like you?
(Sorry, if I sound like your grandparents, but your on-line friends tend to worry about you whenever you confide in us–but in a good way–because we care for you and want you to really get well soon.)
I also appreciate your delicious sense of humor–you crack me up.
I have also had similar health issues save for the PMS stuff, since I am a guy–at least biologically speaking, although….
Wanna know how I tackled this issue? Well, here goes.
I was a victim of a lousy diet. So, I changed my diet. Now I eat plenty of fresh fruits and vegetables, organic. And salads.
Also, plenty of yogurt. And I drink butter-milk too. In other words, a high fiber diet has done wonders for my health.
Switch over, maybe?
I am not saying this will necessarily work for you, but it sure worked for me.
And go for leisurely strolls (not even walks) in the outdoors for short bursts three times a day–early morning, afternoon and evening. Pick a spot where there is natural beauty.
And drink plenty of fresh water throughout the day. Drink herbal tea,( warm) every couple of hours or so (whenever you feel like it).
All this will help to flush out the toxins in your system.
And go swimming every day. Join a gym with an in-door swimming pool if it is too cold in Vermont. Chances are you will thank me for it.
I was really foolish not to make swimming a part of daily life. It will open up your lungs and the health benefits are too numerous to mention. Swimming is the total body work-out.
Cheers to your health.And thanks for writing and sharing with us.
While I can’t relate to your experience directly, I am currently spending months on end in complete anxiety while I wait for a decision on a visa so that I can live with my girlfriend of 2 years. I can relate to feeling powerless, as someone else has their fate in my hands. We can think we’re in control all we like, but every now and then life throws these curve balls to test us. All we can do is learn from them and hopefully grow. The alternative is not worth talking about.
Stuart @ Power Essence´s last blog ..Persuasive Techniques
Oh, yes, the mind goes wild trying to come up with answers when the answers aren’t forthcoming! I know a gay couple who had to wait two weeks for the results of AIDS tests. They nearly went nuts.
I’ve been through it, too. Waiting to even HAVE a test, and then waiting for the test results. In fact, I’m waiting now for the results of a biopsy of a polyp removed from my colon. Even though the polyp was not the type that turns cancerous (usually) and even though polyps in general don’t often turn cancerous, I’m worried.
Hang in there, you’ll get a diagnosis and some treatment, and life will go back to how it was before, I’m pretty sure. I find that things that absorb my mind and keep me from thinking are very helpful. For instance, playing a videogame that requires me to match three colors before a time limit, even though mindless, keeps my mind from having the ability to think ahead very well. TV, on the other hand, doesn’t help at all.
Dot´s last blog ..Comment on I Hate Other People by Jannie Funster
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I want to thank everyone for your comments and support. I am so grateful to be a part of this loving community.
Hi there,
My feeling is that the X-ray will be telling. Depending on the outcome, I can help more. In the meantime I want to say how common your reaction to this process is. Too much information as as bad (or worse) than not enough and folks resort to belief. I have been working on a book about this for the past 18 months or so and the period between the first doc’s visit and diagnosis is absolutely the worst. The plethora of information available on the Internet is not contextualized for any meaningful interpretation by the lay person (or even the professional much of the time). There is simply too much and it’s all the same. Finding the right questions to ask is the critical piece and one you pin those down, your searches will become more meaningful. Most people need help with the questions part form someone who knows the medical field, and who can deal with the Internet.
Hopefully, this will be a transient thing that you can put behind you pretty quickly.
Wishing you the best,
Sheryl
Sheryl Torr-Brown´s last blog ..Eyes, brains and sea squirts
If there’s one thing I’ve learned about this situation, it is that Google is the enemy when you’re awaiting a diagnosis. LOL. Ok, seriously though I love Google. But its amazing how much you can find to worry about. So, I tell myself “Nea, step away from the search engines.” It helps too.
Nea | Self Improvement Saga´s last blog ..5 Steps to Easily Influencing People Without Manipulation
Hey Lisis.
Loved your quote. “Immersing myself in a child’s world removes me from the actual world, and any of its various and sundry grownup affairs.
But I can’t stay in the fort forever.
Can I?”
Sometimes I think that kids are so much smarter than us dumb adults. They are experts at finding ways to have fun (there’s an idea grown-ups), while we are experts at finding new things to worry about. Kids all start out as optimists but us clever grown-ups train them to be pessimists (we use the term realist) by the time they’re about fifteen. We suck the joy, optimism, creativity and fun out of them because we want to prepare them for the ‘realities’ of life. Lucky them. If only we all understood that responsible behaviour, intelligence and common sense don’t need to be at the expense of joy, fun and occasional silliness.
If there’s no fun, what’s the point?
There’s certainly something to be said for some regular fun but sadly, I meet far too many ‘High-Achievers’ and ‘Personal Development Devotees’ who are so busy achieving and climbing the ladder that they look like they’ve had their ‘fun gene’ surgically removed. “Don’t bother me I’m in the zone, I’ll smile in ten years when I’m rich.†Last week I met with a wealthy, extremely busy, successful (that’s debatable) entrepreneur who could easily be the poster boy for stress and misery. I looked at him and thought ’seriously, what’s the point’?
Sure, we’ve gotta pay the bills, put food on the table and send our kids to school, but if the net result of you pursuing your goals is constant stress, anxiety, exhaustion and for the most part, misery, then Dude, come up with a plan B. One that incorporates some fun and joy.
Hope you find out more soon!
I agree that Googling for information when you have such broad symptoms is just scary and not very useful. I have to say though, at some point Google is your friend when it comes to better understanding a diagnosed condition and checking for differentials that the doctors may have missed.
Get well soon!
Anne Moss´s last blog ..Would You Try Human Milk Dairy Products?
I just went six weeks without knowing what was wrong with me, but the word cancer had been thrown into the conversation. Six weeks in which to google, mayo clinic and worry myself to death. It was awful. I hope they find your answer soon.
amber´s last blog ..A Moment of Fun.
At least you have divert your focus on blogging. A good way to put your mind off your misery. Stay healthy and all the best
rickkgoh´s last blog ..Difference Between Stress And Metal Illness
Keep diverting your mind to other thoughts. I have been to that place before and it wasn’t easy. But it will never help if you keep on thinking about it. It will stress you up. Just take it easy and be optimistic.
Travel Purses´s last blog ..Travel Purses: 6 Great Styles
[...] I told you I was waiting for a diagnosis, because I felt worse than I’d ever felt in my life. My blood work, chest x-rays, and EKG all [...]
I laugh and remember if I’m worrying about it then it obviously hasn’t killed me yet so enjoy a few more moments, hours, days or whichever of not knowing