Guide for Talking to the Chronically Ill -- Call for Submissions

How many times have you heard from your healthy friends and family that they want to show support for you, but "I just don't know what to say..."? Have you ever wished for a guidebook that you could hand to healthy people, so that they would know what to say? Well, I am working on exactly that.* And I would like your help.

I want to teach healthy people how to communicate with people with chronic illness. I want to teach them how to be brave, how to be supportive, and what we want to hear. If there is someone in your life who is having trouble knowing what to say, I'd like you to write me and tell me what you what to hear from them. The more stories submitted, the more options we can present them.

What would you most like to hear from your family?
What would you most like to hear from your friends?
What are some of the best supportive comments you have heard?
What are the worst things you've heard?
If someone wanted to approach you to discuss your condition, how would you like them to ask?
What do you wish people understood about chronic illness in general?
What do you wish people understood about your chronic illness, specifically?
What do you struggle with most, as a result of your chronic illness?
Do you want people around you to help? If so, how do you want other people to offer assistance?
Other thoughts? Comments?

Please say whether you would like credit, or whether you would rather remain anonymous. Feel free to submit previously written works, blog post URLs, etc. (along with permission to reprint).

Send your submissions to: pamc.writer(at)yahoo.com
Include your NAME (or Anonymous), CITY, STATE/COUNTRY
Your DIAGNOSIS(es), HOW LONG (you've been diagnosed), whether you're DISABLED (and DATE)
(Include links to your blog, Twitter handle, etc., if you wish)

Submission Deadline -- December 15th

*I've been gone from here working on this, and other fun surprises coming later this month!

What Do I Stand For?

I was sitting with my (former) roommate Mike last night, having drinks, and lamenting my current existential crisis. I knew that I had to figure out my direction in life, what it's all for, before I dove back into work again... because once work hits, I won't have time or energy to even ask these questions to myself. It will be work and managing my health to work, and what's this all for again?! I needed to figure out now, during this break in my contract, what I stand for and what I want out of life. I needed some guiding star, otherwise, what's the point? So Mike told me the story of two women stuck by tragedy...

Both had lost their children to violence: one to a gang shooting, and the other to a hate crime. Both women were obviously devastated by their loss. Neither he nor I could imagine the pain that either of these women suffered. And one woman, justifiably so, was left broken and shattered by the experience. She hasn't recovered yet, and no one blames her, because of her experience. But the other woman used her grief to fuel a not profit organization that turned into the NOH8 (No Hate) campaign. She took her pain and turned it into something amazing for others.

It's not difficult for me to answer the question in that song: "What do I stand for?" That's easy. I stand for the rights of the disenfranchised---those struck by chronic invisible illness, who are disabled by their disease, who can't advocate for themselves because they are too busy trying to manage their own illness, and the havoc it brings. I want to shine a light in the darkness to say, "Hang in there... You don't have to walk this alone. I know what you're going through, I've been there myself. Whatever you're going through---no matter how helpless and hopeless you feel---you still have value to me. You're amazing for what you're trying to survive. Give yourself props!"

What I don't know how to do is work towards that goal and work at the same time. I know what I need to do to get my message out there, but that takes a lot of work... work that doesn't pay. So I need to find a way that I can work for what I stand for, and still keep a roof over my head and medication in my system. THAT is what is totally daunting to me. Trying to figure out how to survive in the meantime... oh, that's big.

But I do have something to stand for, and it's about time I got back to it. I'm not like other people, walking around, wondering what their life is about. I know very much what my life is about. I know very much my purpose. Most people aren't that lucky. I found out that my best friend from college died day before yesterday, and it shook me. He was only a few years older than me. We never know how much time we have on this planet. Time for me to stand up.

Reflections on My Trial Work Period

There are three main things I learned with my trial work period: 1) I cannot work 9-5. I cannot be that strict. My body is to fragile and demanding (especially at inconvenient times). 2) The computer industry mostly doesn't care if you can't work 9-5, as long as you can get your work done. My job isn't shift-work. It's project-based work. 9-5 isn't even a realistic business model for my job. 3) I've still got what it takes to do a great job. The love my work. They want me to come back. They're trying to figure out how to bring me back even now, just a few days a week. But I'm torn.

My main concern is that I'm still very fragile. If I work, the rest of the time has to be spent managing symptoms and spoons. Yes, I can do it, but that's all that I'm able to do. I'm 100% work oriented, and that will make you go nuts really, really fast. We have to be able to "take off the uniform" and "leave work at work." But I don't have time for that. I have to sleep enough to have the energy I need to work. That means everything, including taking care of the house, doesn't happen until the weekends. There's not much time left over for rest and relaxation. I'm lucky that my brother is living here and taking care of most of the chores. I'm sure this place would be a wreck otherwise. I'm not sure I can survive full-time work yet.

I could try to work part-time, but then comes the issue of money. Can I afford my medical care, rent, food, medication, and all that, if I'm only working part time? What are my monthly expenditures, and can I afford only part-time work? The last time I did the math, it didn't add up well. Either I work full time and I'm just barely able to make ends meet (not accounting for debt), or I stay on welfare. There's no in-between. I'd lose my benefits and not make enough money to cover the short-fall.

Then there's everyone here, and everyone that I've helped through the years. If I do go back to work, it would mean I wouldn't have time for you or this. And I love doing this. I love shining a light in the darkness and letting people know: "Hey---you're not alone. Hang in there. Make this look awesome!" I don't want to abandon everyone, and I would have to, if I went back to full-time work.

I have much to think about... your thoughts are welcomed.

WEGO Health Activist Award - Call for Nominations

WEGO is excited to announce the start of the WEGO Health Activist Awards Nominations.

This year, they're extending the nomination period and they've added some exciting new award categories. Now's your chance to recognize someone who has inspired you, helped you, or even changed your life this year - nominate them for a WEGO Health Activist Award!

Click to Nominate a Health Activist
Questions? Get all the details on their WEGO Health Activist Awards FAQ page.

If you want to keep up to date on all the latest WEGO Health Activist Awards news and information, be sure to follow WEGO Health on Twitter and Like them on Facebook!

Invisible Illness Week - Post # 300!

It's the close of Invisible Illness Week, and this here is my 300th blog post! Can you believe it? Yeah, I was pretty impressed when I noticed it. That's an awful lot of writing on dealing with invisible illness. But if you have an invisible illness, you know that I could easily write another 400 blog posts on what it's like. Because, when you get an invisible illness, it transports you to a different planet, with new rules and new realities, that other people just don't get. I didn't get it today for my brother.

My brother has vaccine illness from the anthrax shot, and on his planet, a storm was brewing. I, of course, couldn't see it. I don't live on that planet. Some of the things about our two planets are similar---I know that when I feel bad, he feels worse and will need more rest. He gets the same weather triggers I do, and we're often knocked out at the same time. But this evening, all was fine in my world, when everything was not right in his. I was able to get him some emergency supplies (chocolate), but he still got hit with an attack that left him shaking and vomiting.

I made him promise to never cut it that close again, because I hated seeing him like that. But in his defense, he said, "I've never had anyone respect my illness before." And that just broke my heart. I know what it's like to not be believed, not be respected, and being told that you're making it all up for attention. It's soul-crushing... because first you've got to convince folks, no, you really don't feel well, and that's all while you really don't feel well, so you're not your best at explaining things anyway! It's a moral kick in the gut when you're already feeling vulnerable and at the mercy of others.

Then, if it's doctors that don't believe you... well, they're the gatekeepers to most all things health! If it's not a skinned knee, a mild headache, or a cold/flu, you're screwed when it comes to fixing your problems yourself at home. And when it comes to getting a correct diagnosis... it can take 7-10 years to get a correct diagnosis when your doctors believe you. It can take agonizingly longer than that if they're antagonistic towards you. No one likes an angry nurse. An angry doctor can poison an entire institution against you.

And, of course, having someone on your side who believes you, and has seen your trouble first hand, can make all the difference in the world. Despite what the OSD says about the Anthrax Vaccine, "U.S. District Judge Emmet G. Sullivan ruled December 22, 2003 that the Department of Defense must stop forcing soldiers and civilian employees to get the anthrax vaccine, saying the vaccine is an experimental drug not licensed by the FDA." But the DOD back-ended their way around that by having the FDA call it safe after the fact, even though Attorney Mark Zaid cited research from an FDA panel in 1985 -- which was also mentioned in the FDA statement Tuesday -- that said that "no meaningful assessment of [the vaccine's] value against inhalation anthrax is possible," Zaid said. Based on the research I was directed to by the CDC, there have only been two human studies, and one of them showed severe side effects compared to controls. Um.... There have been drugs, good drugs (Demerol, for example), pulled off the market for far less! And yet there's this whole web site by the Offices of Strategic Defense that are telling me, oh, no... it's just fine! No one gets sick from this! Really?? I found "one study shows that the incidence and severity of side-effects are significantly higher with the killed vaccine than with the alum-based placebo (overall odds ratio 0.16; 95% confidence interval 2.38-27.17)." [Source: http://www.ncbi.nlm.nih.gov/pubmed/9682332] Just fine, eh? Would you like to sell me a bridge too?

My brother deserves a chance to be well. I'm gonna work my pants off to make that happen.

Nervous working...

I know my co-workers probably think that I'm lazy. I don't roll into work until 9:30 sometimes. I take flex days where I work 4-day weeks or half-days sometimes. But what they don't know is my mornings are explosive sometimes. I may roll in at 9:30, but I've been up since 6am. I've just been trying to get myself right so I can handle my workday.

I have to take pills to keep me alive. These must be taken in the morning. I wake with nausea, every day (part of the nerve damage). I still have to keep the pills down. So first, the nausea must be managed, and there's no telling how long that's going to take. It could be fifteen minutes... It could be an hour. Or two. I've learned to wake up early and give myself a lot of wiggle room. Right now, I'm taking time out---every few minutes writing a few words---as I try to manage this migraine that decided to upset plans this morning. Oh yes, beyond the usual monkey wrench, there's also the occasional uber-monkey-wrench. There is no negotiating with a disease.

So I have to start waking up earlier and going to bed earlier. I've made a new resolution to go to bed at 8:30pm and asleep by nine, so that I can wake up comfortably after a solid night's sleep at 5:00 in the morning. That should give me enough time to wrestle with my illness and still make it into work at a decent hour.

Today, however, is not that day! lol (*ow* migraine!)

I'm just glad that my work is solid enough that they're willing to be flexible with me. I am very fortunate, and very grateful. It was this flexibility that allowed me to work, even while technically disabled, before the Great Migraine incapacitated me. It's what's going to allow me to work now, even though I'm still technically disabled (I can't meet a 9-5/M-F schedule, there's no training or work aids that would allow me to do so, either). But I know that from the outside, this all looks like I'm just able to come and go as I please, and work easy. No one can see that I'm coming and going as my disease dictates, and that I have a second full-time job managing this beast.

As a result, I must be very careful never to take advantage of this situation for personal want. Their generosity and trust, beyond what they pay me for my work, is making this all possible. It's not right to abuse that. So I do my best to act in a state of gratitude at work. I remind myself several times a day: "We're all so lucky to be here..." This helps me stay upbeat (but not overly chipper) even on tough assignments. It allows me the emotional fortitude I need to look at a problem and go, "We'll figure it out, don't worry," rather than any number of negative responses. And I hope that makes up the difference that I can't keep a good schedule.

But of course, I still worry that they're not going to be happy about my irregular hours. What I should probably do is relax, because nervousness is not going to help the situation. Here's the self-talk I'm going to try to practice to see if I can't settle into the grove of things...

They like you. They told you as much. You're doing good work. It was a two month contract, and they're keeping you on indefinitely. It's more than you wanted. Don't let that frighten you. It means you can relax, that what you've been doing so far, they wholeheartedly approve. Breathe. You've done great, kid! You know what they expect, and you know you can deliver. Don't worry about when---they don't! Just do it well like you have been. Go get 'em, tiger!

Ah, yes... that feels better. What self-talk do you use?

All work and no play *will* make you crazy...

When I heard people who were healthy enough to work, but not healthy enough to to anything else then complain that they couldn't do anything else, I thought they were being ungrateful. I thought that I would give anything to be even that healthy, and if I got there, I certainly wouldn't be complaining! But I get it now... it's not that these people are ungrateful. They're expressing a very real, very dangerous situation, where the mind is not given the time it needs to disengage and rest.

If our minds don't have enough downtime during the week... If it's just: work-sleep-work-sleep-work-sleep-(etc)-weekend, then, as a result, our minds see nothing but work for five days straight. There's no unwind time, there's no reducing stress, there's no "walking away" from it for five days. And a two-day weekend is not enough time to unwind from five straight days of work. This is no way for any human to live. This shouldn't be true of people with invisible illnesses, this shouldn't be true for the platinum miners in Africa. It's not healthy.

There are studies out there ranging from farm, factory and mine workers, where the work day is so long that all they do is work. And the results of running a schedule like this are always shown to be brutal. Just because we can, doesn't mean we should. The mind need rest and relaxation interspersed between work, or our ability to function suffers. For example, from All Work and no Play can be Deadly (Jul. 11, 2002), Sandy Smith says, "Feel like you're being worked to death? You might not be far from the truth, according to a new study, which found that long work hours and little sleep or relaxation time is a recipe for disaster."

So, blessings upon blessings, my employer is willing to work with me and let me go to a part-time schedule. I need to get more reliable technology, so I can be in full contact with them should they need me, but I will be able to do things like work from home and cut back my hours to less than 40/wk. That will allow me to have the down-time I need to be fully-functional at work. I won't have to worry about the quality of my work suffering as a result!

And my apologies to those whom I didn't believe before now. I get it now, and you're right: it's not healthy to try to just work and sleep during the work week. That's unacceptable. You absolutely need more than that.

I just watched "The Secret"

Do not believe anyone who tried to sell you on the idea that your thoughts create your reality. There is reality, and then there's our perception of reality, and the two are never the same.* Our thoughts can change how we see reality, but it doesn't change reality. The so-called "Law of Attraction" is a myth. Wanna know how we're not shaping reality? Stand on the shore and try to hold back the tide.

Moreover, you can always decide to turn your attitude around. Again, that can change our perception of reality, where we're more apt to notice good things, and shrug off or ignore the bad. But that doesn't keep the bad from happening! People still get sick (which is the majority of people, not the minority), accidents still happen (just ask the E.R.), and we still get things wrong. Wanting it really bad doesn't make it a reality. Just ask anyone who's won the Silver.

We're not powerless. We do have some control over what we notice. We can focus our thoughts to see the big picture, and not let the little things bother us. There are ways to bolster our emotional resilience, and learn how to bounce back from things faster. But "things" still happen. There are still mean and bad people in the world, willing to do others harm. We can't buy the snake oil that says the bad things happened to me because I was thinking bad thoughts. That's BULL$H!+, plain and simple. And it's guilt you neither deserve nor need!!! Go ahead and think what you like. It's not some boogeyman that's going to come up and bite you. You may have a "sixth sense" of things and have the thought before the event happens, but that's just noticing that this time, your thoughts lined up with how events turned out. Statistically, that's going to happen from time to time. It's completely normal. (Or you may actually be spooky. YMMV.)

If I'm having a bad day, a lot of times I can turn that around. Here are the steps.

1. Take a deep breath


2. Decide to start the day over. Everything bad that happened to you is now "yesterday."


3. Imagine the feeling of having started your day, and it was wonderful.


4. Moving forward from that imaginary place of having a good day.


5. Allow the day to unfold in a more positive way, because of your new happy attitude. ("Problem? That's no problem... This is all manageable.")

It's not magic. It's psychology! It's what Twelve Step programs call an attitude of gratitude, and point you to page 417 (what used to be page 449), of the Big Book of Alcoholics Anonymous. But the story behind that was towards the end of his life, when his health was failing and chronic pain creeped in, Dr. Paul O had difficulty maintaining his attitude, and ended up bitter again. But I can't blame him! Unmanaged chronic pain is a devil, and losing your health is something to be mourned! We folk with chronic illness just have more time to get used to it. We learn early that loss of health is the natural state of things, and we learn to make peace with it.

But "The Secret"? Malarkey. Don't believe the hype, and don't punish yourself for things you're not doing. You're not manifesting badness into your life. That's just life. Bad things happen. Good things happen. Some things, that we at first think is bad, we can then become very grateful for, once new evidence emerges. "For there is nothing either good or bad, but thinking makes it so." -- Shakespeare (Hamlet) Free yourself from this idea that you make bad things happen to you. Forgive yourself. Take responsibility for your actions, and let the rest go. You didn't think this to happen to yourself. No one does.

[/rant]

* We actually cannot perceive reality as it is. For one, we don't have the proper nerve receptors in our eyes to be able to see the wavelength of light, called Ultra Violet. Bugs and birds can see that wavelength. We can't. We're all color-blind, in a sense. Our view of reality is very limited. It's enough for us to do wonderful things, but the fact remains: it's still limited. Reality, and our perception of reality, are two very different things; our perception of reality always falls short.

p.s. We do understand how electricity works. It's how we're able to build computers.

[THP] I can't do this...

I give up. This program, like so many other programs, is not for me. It falls short. Most of these programs fall short, and they do so for one big reason: they're written for audiences with first-world problems. On page 126, it says, "Just knowing this quirk of human nature---that our fear of the consequences is always worse than the consequences themselves---can help us move toward a more optimistic..." I had underlined that part, thinking that would be my salvation. I just had to have a more optimistic view of the future! I was over-estimating the consequences! Or so I believed until I started vomiting, just because it was o-dark-thirty. Then it all fell apart.

Well, to be honest, it had fallen apart a few days earlier when I got screwed over by my cell phone company: Here's a replacement phone for your old phone! You've been paying for insurance this whole time, so we've streamlined the process to screw you over. We've made more models so that the basic features of our phone now cost $100 more and require you to extend your contract for 2 years... We're sorry if you don't like that. But if you sign up now.... Yeah, I had a full-on, primal-scream nervous breakdown at 75mph on the highway. That's when things first started falling apart. All the work on happiness from the previous month seemed more than null and void... it seemed like a liability when someone tried to take advantage of me because of it... And then there's the jealousy. Some people just hate happy people. So they'll target anyone whose happy and try to steal their sunshine.

But what sealed it was not two days after this going on, my body decided to start vomiting at some god-awful time in the middle of the night. There's nothing else quite like the feeling of springing from a dead sleep, rapidly navigating to the toilet, and having your body void all its contents. I broke down again, but this time I was so pre-occupied with symptoms, I wasn't even able to cry. My fear of consequences didn't even take into consideration something like this could happen. My fear of the consequences underestimated the consequences themselves. I was minding my own business, fast asleep, when all of the sudden I had a mad dash for the smallest room in the house!

That's why I'm working so hard on this happiness stuff. I want to feel better! The truth is, however, it's not realistic to be happy during those times. There's good news in that. It means that my moments of unhappiness are generated by my body, and not by anything I'm doing or not doing. My unhappiness is not my fault. My feelings of being a small, miserable wretch are an accurate assessment of the situation. In the book there are a series of questions to go through, and it finally comes to: "if the adversity truly is bad, is it as bad as we first thought?" The book never takes into consideration that the answer might be, "yes," or "it was worse..." It only assumes that you must be overestimating your problems.

Because thousands of years of evolution have made us so remarkably good at adapting to even the most extreme life circumstances, adversity never hits us quite as hard---or for quite as long---as we might think.

BULL$H!T

My trauma results from the fact that I had no idea it could be that bad, or last this long. My fear is looking down my life path and knowing that I'm already delicate and fragile from these last ten years. I know how dangerous it is for me just to interact with other people (there's always that person who's being macho and spreading the flu to everyone...and a flu can land me in the hospital, easy). When I start vomiting, that's cause for panic. Because if I can't keep my pills down, I could---quite reasonably---slip into a coma and die. It's why I carry an emergency shot with me. My pills grant me life. If I can't take them, I am doomed. Not exaggerating---my life is literally on the line.

There is plenty of research out there that shows that our optimism can actually land us into hot water, especially when dealing with crisis situations! When something goes catastrophically wrong, afterwards people always say, "We never expected it to happen like that..." Of course we didn't! That's how it was able to go catastrophically wrong. If we knew it would go down like that, we would have prepared for the event, and mitigated the consequences. It would have been handled.

I can come up with three good things daily, I can meditate and do my exercise, I can perform my five conscious acts of kindness, but none of that helps when I'm in the throws of my symptoms. It all boils down to whether the symptoms are managed or not. It's really difficult for me to practice any principles, when I'm in the middle of managing a symptom flare, like vomiting. At that point, it's difficult to think past two words, let alone practice any principles. "Toilet!!!" "Oh, God..." "Nonononono!" "It hurts, it hurts" "Ah, cool, cool tile..." is about complicated as my thought pattern gets. This is where these feel-better programs always fall apart. They don't expect you to be going through this type of trauma on a regular basis.

I have a difficult time reaching "normal" let alone "happy." What I'd like to know is whether I'd be better off trying to squeeze the happiness out of every moment, because I know the misery is going to follow, or if I should play it cool and nonchalant, because I know the misery is going to follow. I can almost hear the author of the book saying, "Well, you know that the good times are going to follow, too. Why don't you just concentrate on that?" Because the good times aren't likely to kill me. I pay attention to the bad times, because the bad times require my attention. They also scare the crap out of me, and I'd like to avoid them, if possible.

Ultimately, thought, I don't like putting all this effort into these happiness programs, when all it takes is one bad night wipe out a month's worth of work. All it takes is one bad episode (well, two, to be fair) with customer service, and I'm having a nervous breakdown. And I'm having that nervous breakdown, after I've already put in a month of work! Where's all that emotional resilience I was supposed to be building? (At the bottom of the toilet, with my dinner.)

So while this program might work well for someone else, it does not work for me. A pity.