It's one of the scariest, most humiliating events that can happen in a patient's life. The doctor comes in and says, "I'm sorry, but we have nothing left for you." That's it. Maybe a 30-day supply of meds, but it's over... You've been fired as a patient. Your heart breaks, and sometimes they even blame you as an excuse to cover their @$$. You feel defeated, abandoned, and most of all, rejected. I thought being fired meant the doctor had decided there was no hope left for me. And for the first six times it happened to me, I felt suicidal afterwards. But thankfully I had friends and former doctors who told me through my tears that it was NOT my fault, and there are doctors out there willing to help. It's just a matter of finding them, which I was finally able to do. Here's how...
First, know that you're not alone. Second, Do NOT take this personally!! They most likely didn't fire you because of anything you did wrong. They fired you because they can't handle your case. That's not your fault, that's their shortcoming. And having you around is just a constant reminder of their failings. Of all the professionals out there, doctors are least likely to admit they can't do something. Which means the only ting left is blame the victim (i.e., patient).
Know that I'm so sorry you're going though this. But also know this isn't the end! This is a Golden Opportunity to find someone who genuinely cares. I've been able to do this myself, even though it took me a long time to figure this out (years). If you follow the steps below, you should be able to find a doctor who won't run away.(YMMV*).
Call doctor's offices and ask to speak with the appointment scheduler.
When you get a live person, ask them if you can ask a few questions about the doctors first. (If you're redirected to a nurse or other staff, that's fine... Just make sure you're talking to a live person for the next steps.)
Start of by explaining that you have a difficult case, so you need a doctor who's going to be willing to spend a lot of time with you. Tell them you're looking for someone who specializes in tough cases, and ask if there are any doctors like that on staff, and if they're taking new patients (and your insurance).
If you're in pain and this is a pain clinic, ask if they allow narcotic therapies in conjunction with other remedies. (You can also ask if they are into any Eastern remedies like acupuncture and mindful meditation.)
If you like their answers, thank them & schedule an appointment.
If you *don't* like their answers, thank them for their time and call the next office.
Repeat until you find a willing doctor.
Once you do, go to your GP and ask for a referral to the doctor you've found (most are happy to do so). If they ask why, tell them the answers you received and why you think that doctor is right for you.
Make your first appointment.
"I thought being fired meant the doctor had decided there was no hope..."
This is not "doctor shopping," this is doctor screening. Some doctors are in the point in their career that they want just the easy, routine cases. They are not likely going to want to help us. Younger doctors are often more willing to take on challenges to prove their skills. Older doctors, doctors close to retirement age, not so much... Unless they've specialized in tough cases (there are such doctors), but those doctors are rare.
IF YOU RUN OUT OF MEDICATION, you can go to your local Urgent Clinic or Walgreen's Clinic for refills until you ware able to get into your next appointment with your GP. Your GP will normally cover medications during a transition period. However, if it's your GP who fired you, that can really leave you in a sticky situation. In that case, call any specialists you see and let them know what's going on with your GP. They're also usually willing to cover temporary medication refills during a transition like this. You can also talk to your pharmacist. Many of them will be able to give you a few days' supply of vital medications, or medications you shouldn't come off quickly. Of course, narcotics cannot be obtained from anyone but a doctor. Worst case scenario, go to the ER.
Good luck, and I hope you find a doctor who will work for you.
I've read a lot of posts in online communities for people who have chronic health issues. One common complaint I hear is how other people don't understand how hard it is for us to do even the most simple things. In their frustration at their loss of ability, they feel sorry for themselves. I've been there. I've done the moping. I totally understand. Getting a chronic illness sucks! But there's a way to flip that around. There's a way whereby we can look at our struggle over easy daily tasks and we can realize that we are MIGHTY. By the very fact that it is more difficult for us, we can then take pride in doing even the most mundane things. It's all a matter of perspective.
And that's my secret triumph. Most people have to go out and run marathons, or hike a 14,000' mountain to do a great thing. I just have to get the laundry done (now there's a Herculean task!). People don't understand how difficult that can be. Which is fine with me. I can take pride in it myself, knowing that I have been stunningly awesome every time I can get that simple task done. Oh, sure, for them it's easy. But then, they have an easy life without chronic illness. That's no big deal for them. It is for me... and for that reason, I can have an amazing amount of pride in myself, just for getting through my day.
I don't have to write the next great American novel. I don't have to conquer the elements in some great quest. I don't have to discover the cure for the common cold (beer) or find the cure for cancer (cannabinoids). I just have to wake up in the morning and take my pills on time. Right then, I've already saved a life for the day: my own! Everything after that is gravy.
If I am able to achieve some semblance of "normal," then that's incredible. I have to obey a lot of very strict rules, and do some really crazy things in order to reach normal. I have to get 11 hours of sleep on work nights (plus Friday, because I'm usually at my rope's end by then). That means going to bed at 7:30, so I can be up at 6:30 in time for work. It takes me two and a half hours to get ready in the morning, because I first have to get all my medications in my system and get them properly digested before I can do anything else. After they kick in and start working (usually an hour before I notice the effect) then I can get started on my day like a normal person (get dressed, brush my teeth, etc.). By the time I'm driving to work, I've already accomplished a miracle! My day hasn't even started, and already it's amazing.
Then, every day that I'm able to come to work and have people think that I'm normal just like them... that's another miracle. I'm able to manage my symptoms through my day so that they're largely invisible to everyone else. I'm able to complete my work, and no one else is wise to the fact that I'm fighting to keep this up. I'm fighting... and I'm winning. Every day is a struggle, and every day, I work to make it seem like it isn't there at all. My success depends on no one else knowing how hard it is, as though it's no bother at all.
My self esteem comes from my ability to make my problems no problem. It's a lot of work!!! And each and every day I can be proud of myself for my efforts. No one else knows how much I struggle, and I like it that way. The less they know about my disease, the more successful I am. Like the graceful swan who is gliding on the surface and paddling like crazy beneath the water, so too do I make all this struggle look effortlessly beautiful. That's my secret triumph: I make this look awesome.
So, rather than feel sorry for ourselves for all the extra things we have to go through each and every day (not to mention the crazy drama that pops up as a matter of course), my suggestion is take all of that anger and turn it into pride. Yes, it's difficult to the point of tears. But if you can manage it, and do so without the tears, well then, look at how mighty you are! If you can put up with hellfire and brimstone, and do it with a smile and a cheerful attitude, there's no better way to cheat the devil. Be proud of every little thing you can do, because these diseases want to make it so we can't. Hold your head high, just for the fact that you endure. That alone is mighty enough.
But I don't look sick? Thanks! I work very hard to keep it that way. ;)
I'm bringing this post back from the vaults, it's a post from the very early days of this blog, when I had little exposure. Now that a few of you are listening (*waves*) I'd like to revive this piece.
First, let me introduce you to this internet gem... (edited for work-safe content)
A 23-year old medical student makes lists of all the tasks that he must accomplish each day. He spends hours studying and refuses to go out with his colleagues even when there are no tests on the immediate horizon, preferring to spend his time looking at specimens in the laboratory. He keeps meticulous notes during all his classes and prefers to attend every lecture, not trusting his colleagues to take notes for him. He is doing well in school and has a girlfriend who is also a medical student. Which of the following disorders does this student most likely have?
A. OCD
B. Obsessive-compulsive personality disorder
C. Obsessive-compulsive traits
D. Schizoid personality disorder
E. Paranoid personality disorder
[and written in] F. F*** you, that sounds totally normal. A**hole. [Full article: http://www.globalnerdy.com/2011/05/04/thats-not-ocd-youre-just-a-slacker/]
Now, let's look at this little gem picked up from a site offering professional services (yes, for money) for coping with chronic pain ...
Catastrophic thinking involves magnifying a negative situation so that it seems more negative than it is, worrying and ruminating about it, and holding pessimistic beliefs about the future. It makes coping with pain more difficult. Here are some examples:
“My back is killing me.” (magnification)
“I can’t stop worrying about what my headaches might mean.” (worry and rumination)
“No treatments will ever help me.” (pessimism)
“My life is ruined because of my pain.” (magnification)
“I spend most of my time thinking about my pain.” (worry and rumination)
“I’ll never get better.” (pessimism) Catastrophic thoughts don't help you cope with the pain.
*rolls eyes* Here's my take on the above:
My disease is killing me. I carry an emergency shot and wear a medic alert in case it tries to suddenly, which it has. Ain't a magnification if it's true. And I have to remember how fragile I am so I can act with the appropriate care. That's just responsible.
If I stopped "worrying" about what my headaches might have meant, I'd be dead now, thanks. I'm going to continue to "worry" about my symptoms, because symptoms mean there's something wrong, a**hole! (to steal from the line above...)
No treatment is possible right now. That's not pessimism, that's just a fact. Soon as that changes, I'll do a dance of joy, but until then, I've got to live with reality... not "someday."
My life has been ruined because of my pain. My career? Over. Finances? FUBAR. Credit score? Ha! Having progeny? Not possible. Scars? Lots. Irreparable damage to my body? You bet. That life? Gone. I will never be the same. Again, not a magnification if it's true.
I do spend most of the time thinking about my pain. But that's because I'm usually IN pain. I use denial as much as possible, but I can only do so much of that safely. And there are other responsible reasons to think about it even when I'm not in pain. Worry and rumination aren't inherently bad things!
I'll never get better. This is both true and not true. I'm not going to get better but I can live better. This is a degenerative disease. The only thing I can reasonably hope for is better management of my symptoms. But it's like throwing a wet blanket over a radio: sure it muffles the sound, but the problem is still broadcasting loud and clear. That's realism, not pessimism.
*sigh*
The problem with these well-meaning sites is that there are going to be people, like me, who look at that list and think they're failing somehow because they can't get to these so-called benchmarks of psychological health. But it's not a failing of ours... it's a no-win situation imposed by our disease.
So let's try rewriting that list a bit more positive-realistically...
My disease is killing me, but it's been losing so far! Ha!
My symptoms may mean something important. I will trust my intuition and work with my health providers to create a constructive plan in addressing them.
No treatment may ever help me, but I can keep an open mind and give new ideas a chance to work. Even if no treatment ever does help me, I can say that I tried and find other constructive things to do with my life in the meantime.
My old life was ruined by my pain. So I'm making a new life that thrives despite the pain.
I may spend most of my time thinking about my pain, but I make sure that it is within reason. If it is to prepare for, manage, prevent or resolve my pain, that's responsible thinking. If it's to look for new opportunities or advancements in pain treatment, that's okay. But I will make sure I also have information on current events so I can keep up with polite dinner conversation.
I'll never get better, but I don't have to. I can do the best with what I've got left and make this look Awesome.
I lived for years without hope. Hope can be a liability when dealing with a chronic illness. I got tired of hoping this next drug would work only to be disappointed time and time again. My heart would break each and every time the treatment failed. It became too much.
So I said: Screw hope. I don't need it. I don't have to believe in these pills to make them work. It's not like in Peter Pan where I need happy thoughts to be able to fly. All I need is tenacity. All I need to do is not. give. up.*
And the strangest thing happened... I improved my situation anyway. No hope or happy thoughts required.
There's a story from WWII about the allied forces hearing that the Germans were taking no prisoners; they were just slaughtering everyone. The Germans believed this would have a demoralizing effect: taking all hope away. What soldier would want to fight if it was certain they were going to die? Why fight when there's no hope of a tomorrow?
It had the exact reverse effect. When the allies figured there was no way out, the muscled up. The Germans aren't taking survivors? Well, let's take out as many as we can because that's the best we can do. They fought like tigers.
I say, so what if the situation is hopeless? That just makes me standing up to it that much more awesome. Yeah, this disease is big, scary, and frequently totally overpowering. It sucks. It's unfair. It's only gonna get worse before it kills me. So what? No one gets out of this life alive... but I can face it with dignity until then.
"Our arrows will be so numerous they will block out the sun." - Persian emissary
"So much the better...then we shall fight our battle in the shade." - Dienekes, Spartan
As recorded by Herodotus, Battle of Thermopylae, aka The Last Stand of the 500
P.S. I learned that you *can* give up, if only for a little while. I gave up for a few months here & there... but I would get tired of that, and eventually get back to researching, networking, reading, etc. And when I got back too it, I found all sorts of wonderful new discoveries in my absence. So don't feel bad if you have to give up for a while. You can't stay at the front all the time.
As a society, we've taught ourselves that if we're successful, we'll then be happy. But with each success, we then place the goal post out farther: I need a better job, better living arrangements, better car, better... whatever. And then we can never be happy, because we never get there. But now science has figured out how to turn that around. From a field called Positive Psychology, I bring you, The Happiness Project Facebook Event.
There are daily exercises, as well as individual projects we're going to go over that you can do at home, all geared towards making a happier you in a month (though you can continue to participate longer if you wish!).
The Happiness Advantage details out how to take this journey into transforming our minds on seeing the positive, and the opportunities available to us. We can use this event to help each other, because building up new patterns of behavior (like eating well) is easier with moral support!
So this is a no-pressure event. If you miss an assignment, don't worry, just try again the next day. See how much you can do, and if it helps you feel better about your life. I want to keep this fun and low pressure. This is about happiness after all!
Here's This Happiness Project:
1. Say three good things that happened to you that day. Shawn alternates in the book between calling this "Three Good Things," and "three things for which we're grateful for," that day. Either one works. Do this every day, posting at the event, your timeline, or in a paper journal.
2. Blog or paper journal about one positive experience, past or present. Write for 20 minutes, three times a week. If you blog, share links here to spread the positive story goodness!
3. Meditate for 5 minutes, every day; just concentrate on breathing in and out. Meditate on something positive (real or imagined beach vacation) for 20 minutes, 3 times a week.
4. Exercise. (They say 45 minutes 3x/week, but if you have heath issues, be sure to go over any exercise plan with your doctor first.)
5. Do 5 conscious acts of kindness. This can include publicly showing your appreciation for someone else's hard work, paying $3 towards lunch of the stranger behind you in the drive thru, calling up customer service just to say everything is working and that you like your products, letting someone go ahead of you in the grocery check-out line, picking up 5 pices of trash in a public park, whatever... Do these 5 Conscious Acts of Kindness once a week.
Studies have shown that we need 4 positive to counteract every 1 negative. That means, for every awful story of despair on the news, you need four positive stories to balance out. For each negative comment you hear about yourself, you need to hear 4 positive comments to come back up. So, post things that help you with your positivity here, and that will help someone else have a positive story for their day! (Feel free to post anything that restores your faith in humanity, here. That could even count as one of your conscious acts of kindness!)
I'll also be posting other fun, uplifting, positive projects that they mention in the book, like: How to give your job meaning, even if your a janitor! How to have happy dreams about the future. How to help make those happy future dreams a reality. All sorts of goodness!
Anyone is welcome to join any time.... Stay for 30 days or stay for more!
Since some people have been eager to start,
Today I began the Three Good Things part of the exercises.
Here's the format. I'll make a daily "Three Good Things!" post some time in the afternoon. Remember, though, that it's good to wait towards the end of our day before sharing. When you're ready, reply to my post with your three good things that happened to you that day, or three things you're grateful for that day.
It's the act of remembering our day, and looking for the good things, and drawing those memories that is a big part of this. But sharing with others is also an important part.
In the book, it mentions how one powerful executive in China decided to share his Three Good Things with his family at dinner each night. Each member of the family participated, too. When the project was over, he didn't want to keep doing it. (In the book it explains why...) But his children then refused to eat dinner until they did the Three Good Things exercise.
It's not just what happens to us that's important. It's that we share it with others, too. This is what brings people together. When we share about good things, everyone's experience of goodness grows. We can actually experience the other person's happiness when they share, because we are then reminded of similar events of happiness in our own lives (or we can imagine such events and experience the happiness that way). Happiness magnifies happiness.
I had to add a disclaimer... See, I forgot one little thing: the body doesn't care if it's good stress or bad stress. Both include a shot of adrenaline & cortisol. Basically he's exchanging a bad stress for a good stress. But if the problem is with stress itself, regardless of whether it's good or bad, then this system still incurs health costs. I forgot how sick I can get from *good* things happening. I can't lose myself in flow without being really cautious (which is kinda counter-active to flow, so....). While I cannot manage this! I still encourage those with healthier bodies to try!
There is no way to insulate ourselves from mistakes. You can memorize everything, you can graduate magna cum laude, and get more degrees than a thermometer... You will still make mistakes. No one is immune. There is no vaccination. There is no pill to make you perfect. Stand up, and know that you are enough anyway. There is no formula for a perfect life. In fact, did you know that there are two types of happiness?! (You do, but you probably weren't even aware of it.) And most of how we go about happiness is all wrong. We go for happiness-in-the-moment, when we should be going for happiness-in-the-memory.
What's amazing (they've measured this), is that my happiness-in-the-moment can be greater, but it's my happiness-in-the-memory that is more important to my overall sense of well-being. That is, I can go through a terrible experience, but if I'm able to remember it in a positive way, it gives the whole experience a feeling of happiness. And it's this memory of happiness that is more important to how I rate my whole life as whether it's happy or not. Conversely, we can be happy for something in the moment, but if we don't remember it in a happy way, it can spoil the whole experience. We know this already. We have a phrases for it: "buyer's remorse." ... "the Honeymoon period" ... "it seemed like a good idea at the time." I can be absolutely thrilled in the moment, but if I remember it in a negative light, all that momentary joy is meaningless. And we can be enjoying and experience and having a grand old time, but if it's ruined at the last second, the whole experience gets ruined. We were happy for 99% of the event. But that 1%, because it was the last one percent, makes or breaks all of it.
Isn't it funny how our minds work? Here's the guy who did the science behind it:
There was a skiing trip that my family got to take one year where everything went wrong. Our plane was delayed by several hours so we didn't get on the ground until around midnight. We were all kids at the time, so we were exhausted. When we finally piled into the rental car, the first one wouldn't start. So we piled everything out, put it in the next rental car, only to discover once we'd left the lot (of course), that the gas gauge didn't work. Third rental car, and we're finally on our way, only to then go through so many other mistakes and injustices on the trip (the hot water heater in our unit self-destructed, the replacement unit they gave us the front door wouldn't close...) that it just got funny. It was so absurd, and so much went wrong that we ended up laughing about the whole thing by the end. It was something out of National Lampoon's Family Vacation. And even though it was the vacation from hell, we still laugh about it to this day. At the time we were miserable. We've been happy about it ever since.
I hold the power to be happy about all my memories, if I want. There are certainly some bad memories that should probably stay bad. Hot does still mean hot, and fire burns... But even if the experience was terrible, I don't have to remember the experience terribly. College was an awfully hard experience for me, constantly filled with stress, financial worry, poor health and near-constant performance anxiety. But I got through. And I can look back on that whole experience proudly, even if I was a wreck at the time. Same goes for my health experiences. They're awful to go through! But when I triumph on the other side, I can look back and be proud of myself for going through all that. I have very visible, bright, white scars on my face from battling MRSA (it nearly killed me). But I never hide those scars with make-up. You should know I went through battle. I'm proud I survived. The scars tell that tale.
I can even help write this story of happiness ahead of time. I can look at my life and imagine, "Now, when I look back on this time, what am I going to be grateful for?" Thinking of my life in those terms, I can set myself up for happiness in the future, and experience a taste of it now. For me, even though I'm desperately trying to get back to a "normal" life, I am going to look back on this time and be grateful for all the research I was able to do. I've had the opportunity to let my curiosity wander and chase after what it finds fascinating, and I have found some amazing things (including the video above). Since I now know the memory is more important than the experience, I can see my life for how I will remember it, and then the experience of it isn't so difficult. Right now, this moment can be broken all it wants, if I can remember it happily, that's what counts. I can be broken in many ways, but if I remember me happily, that's what matters.
How are you going to remember your today, tomorrow?
So there you are... a good health day has actually happened on the same day of a nice social event you want to go to. You dress up all spiffy, get your game face on, and head out to the party. You get there, everyone is talking and making chit-chat. Suddenly, someone turns to you and asks you, "So... what is it you do?" PANIC TIME! Do you let this stranger in on your world of health problems? They might look at you like you're contagious and walk away, or possibly worse, start giving your unwanted advice! Healthy people want to talk about your job (which you may not have), hobbies (which you may have had to abandon), and interests (which may be totally health-centered because you're hunting desperately for answers and solutions). What do you do?!? Well, one way to get through is to fake it. In this article, I will discuss three ways to talk about our health that make it seem like we have a real life.
1) Act like you're a volunteer.
In this instance, think of yourself as a volunteer forwarding the Grand March of Scientific Progress: "Well, I'm involved in health research looking at the long term effects of [name one of your medications] on patients with [name a related diagnosis for the medication]." Now doesn't that sound a lot sexier than, "I deal with nausea all day for which I take phenergan." They'll be fascinated, even if they have no clue about the diagnosis or medication you've rattled off. They'll want to know more: "Oh? What does that involve?" Don't lose your cool. "I meet regularly with doctors as part of a long-term follow-up studies." or "I take part in post-clinical trials. We discuss medication side-effects and other patient issues." Both answers say that you're a study participant. Technically, this is absolutely true. If you have problems with a medication, doctors will report their findings. It doesn't matter that you're a patient as part of that process. Let them guess that you're doing this out of the goodness of your heart. But they'll probably be a bit curious: "Do you actually take the medication?" Just smile with confidence and say, "Oh yes, but it's all under the close supervision of a doctor. And if it's for the advance of science, I don't mind the risk." Now you sound noble and brave.
2) Act like you're a professional.
For this one, you're not trying to impersonate an actual health professional. Rather, consider your experience as a health patient in a professional light. Talking to other patients online? That's networking. Blogging about your experiences? That's freelance online journalism. Let's take a look at that dreadful question again: "So what do you do?" That question can be followed-up with something like: "I work with outreach programs for patients suffering from [name your diagnosis] in online communities." Which translates from: I greet folks online when they join the health board I'm on and make them feel welcomed. If the party-goer wants more information, you can say something like, "Part of it includes patient education and patient empowerment... Helping people find online resources so they can then help themselves... That sort of thing." Which means: I share with people about our symptoms and point them to cool websites I've found. If they press you for details, you can say something like, "One common issue among [diagnosis] patients is [symptom]. We deal with this by taking a hands-on, team approach leading patients through self-care processes they can do at home. Sometimes we're able to recommend possible treatment courses they haven't tried that they can bring up with their doctor." Which means: I talk to other patients directly (online) and we talk about self-care we can do at home. We exchange ideas about stuff we have heard of and/or tried. Now all that talking on Facebook and in online communities sounds glamorous and self-sacraficing.
3) Act like you're an activist.
If you do anything involved with signing petitions to get the government's help with health care, you can say: I'm involved in political activism for health reform. When they ask questions, you can tell them about the challenges facing patients with your disease, and about the petition you signed. It always helps to do your homework on what you signed so you can easily talk about the details. Know what the goals of the petition are, who the sponsors are, and how many signatures are currently on it. "I checked quickly just before I came here, just to see how we're doing, and we're up to..." sounds very pro-active and high-minded. Look up other political activity around your disease, even if it's in other states. It sounds very cosmopolitan to be able to say, "Did you know in Florida they're addressing this by..." Or even more worldly still, "In Germany, they're looking into...". It's also great to be able to mention a celebrity who has your condition and the kind of things they're involved in for your disease. You can also look up news stories related to you disease, so you can say things like, "There was an article in the New York Times just the other day on..." Google is a wonderful tool. Now you sound informed and well-read.
So there you are! Three ways to fake having a real life, even if most of your time is taken up dealing with symptoms, doctor's visits, treatments and other god-awful necessities of a chronic illness. I bet you didn't realize your life was just that cool! Seen from the proper perspective and framed in the proper way, you too can make this look awesome!! Healthy people will never know the difference. (Unless they get wise to this article. So, shhhh! ;)
