It’s not “Giving In or Giving Up”, the Myth of the Chronic Illness Superhero

Chronic illness superhero

Sorry if I disappoint you but there is no Chronic Illness Superhero. I guess the average sick person, who is struggling through, doing the best they can, just isn’t glitzy enough to make headlines. Actually, it seems that needing anything at all through this very difficult journey has come to mean you are weak or even (gasp!) ungrateful. Neither of these is true. I’m not sure where the assumption that people who need help are just lazy, or at best undesirable, comes from or why it persists. In fact, the strongest people I know are the ones who recognize early on that they cannot do everything. That no one is perfect. Most importantly, that asking for help is not a sign of weakness. But the stigma continues…those that don’t show their weaknesses are by far the stronger, and a much more desirable lot. OK let’s be real for a second. I’m so done with this.

Let me just throw this in really quick: this topic really gets me riled up, maybe you can already tell. I hope you can understand my point of view without getting mad at me. Oh and forgive the major sarcasm if it isn’t your thing.

The Story

I am so tired of hearing about the Superheroes of Chronic Illness. Once again I just finished reading an article about a woman who had colon cancer. Thankfully, they caught it early and though she still needed some chemo treatments, she was able to have a nurse come to her house to administer them. If we stopped right here that’s enough of a hero for me! It is not pleasant to go through surgery and chemo. It’s a difficult situation for just about anyone.

My own mother just went through this exact thing a few years ago. For her, it was a hard process get through, it was awful to standby and watch, and I felt bad but happy my mom was alright. So this woman seemed to be on the same track, ultimately a good thing.

But the story went on to explain that she also had four kids, a husband and a full time job. Wow! That’s a lot even if you’re not sick! Seriously, how is she going to do this?

Then, the writer went on to praise her for not giving into her illness and lauded her for fighting back with such flair! What a Superhero she had learned to become! She had pulled herself up and forged her way through. Cooking gourmet meals, finishing dazzling reports at work and of course, she still had time to help with homework and tuck everyone into bed. Um, really?

Oh, and as an added bonus, her house was sparkling clean too, so it was especially nice when the nurse came to give her chemo. They could sit down for a nice cup of tea as well. Are you still with me? Wait there’s more.

Here comes the real kicker- she of course was refusing any and all pain medication. She felt like it might make her feel less alert. (Oh no, not that!) She needed to be on her toes after all!

Right about now is when (feeling slightly nauseated) I start asking myself, “How is this possible?” Was she also running a half marathon after treatment? Oh hell, as long as we’re doing that…why not shoot for the moon and go for the full thing? Cuz, you know, all these sick people really would be a lot better off if they just reached deep down inside, skipped the pity party and didn’t let their illness bring them down, right? Yeah, right.

Attitude is Everything, But This Ain’t It

Positive attitude can be such a tremendous advantage when you are chronically ill. In fact, I believe it’s really the key to survival for us, especially if we’re to have any sort of happiness at all. And while mental fortitude can either make it or break it in a lot of situations, creating an impossible Superhero that is supposed to inspire us is only taking us down by glorifying unrealistic outcomes. Maybe this woman does have what the article says, but what is left out can be as important as what is included. So, I’m not so sure I believe all of this story is 100% true.

The Chronic Illness Superhero

Let me first say that I know there are people out there doing it all, everyday. And I truly admire that. Especially when they have kids! I was unable to do it alone and I don’t know how they do it. I know how hard it is and they are amazing for what they do. But here’s what gets under my skin:

  1. The article has to be leaving something out. Everyone’s all smiles, in a perfect house with positively gleeful children and the doting husband. Maybe this can happen, but I suspect it’s not all that often, even when everybody’s healthy.
  2. Language like “not giving in”, or “pushing through no matter what” implies that the rest of all of us sick people must just be lazy bums that simply don’t or won’t try hard enough. As if we like being sick and hurt. And of course we must be positively thrilled because we’re  collecting all that free money. Yeah, right. At the end of the month I literally have about 20 dollars left. That’s without personal things as simple as hair conditioner. I am grateful that I can pay my bills. But trust me, we’re not rolling in the dough. Maybe the people enjoying all that free wealth are the frauds and not the actual sick people. Just sayin’.

So I’ve come to a few conclusions:

  • We are not Superheroes
  • We are sick
  • We are not inferior
  • We’re not useless if we need help

Cchronic illness superheroWhen reading about the “I can do everything” sick people I think there’s a little more going on behind the scenes. First, I know that the magazine has to jazz it up a little. It wouldn’t fit well on all their glossy pages if they didn’t right? Second, when people talk about themselves they tend to emphasize the positive and diminish the negative. That’s just a natural thing we do.

I also think the journalist who did the interview more than likely only talked to their subject maybe once, possibly twice. I really doubt it was more than a few hours total. And if they do follow up they’re still not THERE throughout the entire length of the treatments, nor for the real daily life. A half hour follow up doesn’t describe what the 3 AM nausea was like two Tuesdays ago.

So the articles- while maybe true to a certain degree-make me not put much faith in them . And kudos to the woman if she really is handling things so well, I wish the best for her. However, while this is a nice, feel good story for a reporter and the readers it’s not so great from the perspective of a person with chronic illness. At least not for me, in fact they make me feel terrible.

I was not able to continue to work full time. There weren’t many gourmet dinners, and the house was far from spotless.

My focus was on my illness, getting to the doctor, sorting through meds, and trying to take care of my kid. It was very, very hard.  And I had a loving family and help! I also was trying to get as much rest as possible. My end goal was to not die just yet.illust man bent over

 


 

As for others I have known, going through chronic illness with me, there are two that stand out. They too had their own personal struggles. But both were really dealing with things well and doing alright physically. I was bewildered when one of them told me she was still at work and believe it or not, went sky diving on weekends! (Yes, sky diving. I don’t get it either.)  I really admired her and I will admit was secretly getting a little jealous (for that I am sorry). And then, abruptly, that all came to a screeching halt.

Things got complicated.

At first she switched to part time work and later had to go on full disability. It was really the saddest news to hear because she is very young (I think she is now maybe 35). That news sucked a lot of wind out of my sails. It was hard to hear. I wish she could be sky diving again.

As for the second person, he was about my age now (50) when I first met him 16 years ago. He was able to get a liver transplant, deal with some very strong immunosuppression and still had to take on a few other illnesses. He had twelve years to go and continued at work right up to retirement. As far as I know he is still thriving. And that is awesome.

So I’ve seen both ends of the spectrum. You shoot for the best possible outcome. You’re grateful for your doctors and modern medicine. You love your family deeper than ever before. You deal with where you may fall.

Sometimes things can actually work out. They are rarely perfect. And I really wish people would stop and think about what praising an almost impossible ideal can do to the rest of us that are dealing with one or several chronic illnesses. Still, it persists.

On top of not being the superhero, we should also realize that it is not a very good idea to push yourself when you’re sick. Playing the Chronic Illness Superhero and ignoring medical advice against doing it all (with or without flair) can get you into serious physical and psychological trouble.

Looking Forward

Thinking positively and ahead, in my next post I will tell you all about how this year I would make no resolutions. That I must use January for rest and recuperation. But I think I’m going to have to bend my rule just a little already. (Ooops.) I will resolve to care for myself as if I were a treasure. I’m not going try to be a superhero.

That means doing a few a commonplace things I haven’t been doing for fear I might look as if I’ve given up or that I am just plain lazy:

  1. I’m using the handicapped space because I can barely walk some days. And I shouldn’t feel guilty about that.
  2. I will always use my cane because I mistakenly thought it would make me look like a little old lady all bent over and shriveled up. That was wrong. It helps me to stand up tall and walk a bit more properly. Better for my body and better for my soul. My illnesses should not take away from the fact that I have done great things like being a Mom, a former business owner, and a (little bit past) middle aged woman who has learned a thing or two. I should be proud of that alone and so should you.
  3. I’m going to use the silly scooters in the store if I feel I need it. (Grocery stores are much bigger now. They didn’t used to be the size of a golf course).
  4. I need to rest and rest some more when I need it. And not feel bad about it. This is probably the number one thing I wish I could convey to anyone new with a chronic illness. It is soo important. (I’ve become quite good at that.)
  5. I won’t say to the doctor that I’m just fine when I’m not. Talk to your doctor with brutal honesty. Naturally they would love to hear you’re a Superhero. Their goal is to make you better. But they don’t want to hear it if it’s a cover. Truth is what will enable them to help you.

So I’m saying no to the superhero. I’m saying it’s OK to be sick and less than perfect.

Take excellent care of yourself first. Use the airplane pre-crash scenario and put your oxygen mask on first, then tend to others around you. (Or, how can you help someone else if you’re not breathing?) Don’t buy into the popular mystique of being untouchable or non-human. Leave that to the superheroes at the movie theater. And maybe the glossy mag articles too.

Here’s to being a regular person. Happy New Year.

Happy family chronic illness

 

 

Kate

 

 

three ways happiness

3 Sevens to Happiness

ways to happiness

Seven Reasons to be Happy Right off the Bat

First, it may sound odd but be happy for sadness, without it you wouldn’t know how happy you can be. Knowing that things can get pretty rough sometimes makes the things you already have a huge reason to be happy.

Things like:

  1. You got out of bed today. Let’s start small. Seriously, there are days that I can’t get out of bed. With chronic illness we truly know the value of being able to get up and get going in the morning. Because sometimes it just isn’t going to happen.
  2. Coffee. Or tea. Or ? It’s the little things you get to enjoy throughout the day that count.happiness ways to find
  3. Medicine.  I hate that I take 20 pills everyday. But really, where would I be without them? One word – dead. Granted, some are for minor things but  others do keep me alive. So it’s a really good thing to have that medicine and the scientists who figured it out. If it were 200 years ago where would I be?
  4. Family. I am fortunate to have an amazing family. They have backed me up every step of the way. Not once did I ever feel they didn’t believe me nor did I feel any sense of resentment toward me. Maybe you have that with your family or a social circle that is supportive.
  5. My doctors. Oh yes, I’ve had some bad ones but the beauty of this is I finally learned to stick up for myself and created a medical “team” of wonderful doctors that truly wish to help me. Finding good doctors is the best thing you can do for yourself.
  6. A lot more compassion for pretty much everyone. Before I got sick I didn’t realize how negative things affected other people. I honestly didn’t notice. I just worried about myself. Now, I have a much greater understanding of why people may act a certain way. You never know what may be going on in their lives at any particular time. I can deal with people better realizing this.
  7. The basics. Let’s face it, if I had to get out of bed and wash my face in freezing cold water, then go out to the well to bring water in for washing dishes…I would not be happy. ‘Nuff said.

 

How about this? Let’s say your having a bad day.

I’m going to ask you (pretty please) to try these things even if you have to force it, OK? Try it and see what happens.

  1. Smile at everyone you see. Hard to do sometimes but do it.
  2. Say please and thank you everywhere. It really won’t hurt you to say thank you to the cashier at the store.
  3. Fully immerse yourself in a puzzle/game for half an hour. Make it something that you really have to focus on.What happens? If you do it right it distracts you from the negativity of the moment, kind of opening up an opportunity to reset your mind.find happiness
  4. Recognize you probably won’t get a lot done. No one can have a super highly productive day every single day. When you have a chronic illness to carry around it means we have even less than normal. DO NOT blame yourself. It’s all part of the game. Besides if someone you know says they are always super fantastic productive… they’re lying.
  5. Play happy songs. Sing really loud in your car if you want to.
  6. Get out of your house. Go anywhere. The store, the bank, even the backyard will do if you don’t have a car. It’s sort of the equivalent of changing from dirty, grungy clothes to pretty, clean clothes. Different surroundings can change your day.
  7. Listen to people laughing, its infectious. Notice it all around you, there is more than you think.Click To Tweet

 

Overall Mission: Happiness.

Some things to keep in mind that can work hand in hand with living a happier life:

  1. Practice gratitude every day.
  2. Take up a hobby that you truly enjoy. Try several to see what fits.
  3. Laugh at your mistakes. For some reason I can do this all the time. But some people really struggle. Try this: imagine telling your friends the story later and emphasize how silly the mistake was. Try to see the funny side.
  4. Your version of “Family Sundays”. Create one thing you want to happen once a week that you know will do you good. For me I instituted ‘family sundays’ when my son was growing up. It didn’t have to be big, it could just be a little picnic in the park or going to a movie, etc. Those Sundays are some of the best memories of my life.
  5. Understand how strong you really are. If you sit down and list out all the hurdles you have overcome you might just surprise yourself. Life is hard in general, living it with a chronic illness means you have a lot more strength than you give yourself credit for. Be proud of yourself for a change.
  6.  Be satisfied with one cupcake. This is just my way of saying be happy for what you have and leave the unhappiness about what you don’t have. Plus, in my example, if you ate 4 cupcakes you’d just feel sick.  Get it?
  7. Hang out with happy people. If you’re around doom and gloom personalities a lot I beg you to try to change your social circle. You cannot live a happy life with that amount of negativity. It is far better to celebrate the goodness than to focus on the badness.

There are so many ways to put a little happiness in your life. Keeping things on the light side can really be hard. Especially when you’re facing a terrible illness. Take these lists, add items of your own and always seek out happy moments. That’s the real trick. Because happiness can be all around you. But you might not see it if you don’t look.

I’m sick, why be happy? I Think I Have the Answer and You Can Have it Too

sick why be happy

Yes, I’m sick, why be happy? Good question. And I think I have an answer. I’ve been ill for years, starting way back to when I was a little kid. Anxiety and depression kept me from a lot of things, and I felt ill a lot…achyness, sore throats, excessive tiredness…that kind of thing. But somehow I muddled my way through all the way to age 36 when I became mysteriously and severely ill and had to have a transplant!  I have no idea how, but I was fortunate enough to get one (that doesn’t always happen, sadly). But I was lucky, so after my liver transplant I figured that was it. I had always felt sick (still did) then I had my big scare, so now I’m all done with bad news. Still, I had sick days but I was happy. I was alive after all!!

But it wasn’t the end of bad news.

After a couple of serious bleeding incidents I ended up with Chronic Kidney Disease. I was not happy. But eventually it sunk in, I accepted it and carried on. Now, at 50,  CKD thinks its going to take me down  because I’m going to have to start dialysis. But that’s not gonna happen. You can read that story here.

Yes, I’m extremely upset. Yes,I’ve cried. A lot. But believe it or not, I’m still happy. Why?…. Why not?

She seems happy!

Not as easy as it sounds though, right? And to be perfectly honest I do have days where I’m not happy, I feel trapped in a crippled messed up body. It sort of feels like an encasement all around my body that no one can see. There’s a whole person in here dying to get out. I’m only human. I try not to let my brain go there too often but when it does I just cry it out. Crying is OK. It’s such a good release. And then it’s over.

I’m sick, why be happy? Or how to get to happy

I don’t enjoy  being sick. I feel like I have lost so much time and it angers me. But  here’s my logic: I don’t feel well most of the time, so why would I want to make it worse by being miserable during the good times? Why not find happy moments and relish them? Why not try to find the good things that I can and throw away the bad? I think your crazy not to.

And also, it has sunk into my brain that even if I might die younger than i thought, it doesn’t mean that I’m not here right now. And even though most days are difficult, I still get some good ones now and then…and the best thing is that even if I do have pain or feel awful I can still have joyous things happen.  For example:

  • I didn’t feel good the day my son graduated. But I was pretty darn happy.
  • I drove to my sister’s once (500) miles away) and I was so exhausted from the trip I spent the entire time on her couch, But I saw her, and had so much fun just catching up and goofing around…it was well worth it.
  • Hell I’ve even been happy after throwing up all day, just because it finally stopped and I felt better!
  • Plus I can laugh at just about anything if its funny enough.

Think About It

Now I hate the thought of dialysis but I’m happy there is something that keeps me alive be here for my son, my husband and even my mom and dad. Hey, even though I’m older no one wants to bury their child, right? I actually though about refusing dialysis and just letting nature take its course but when I thought about how much pain it would cause the people I love, it was easy to say dialysis is great! And thank god I have the choice to keep me alive. I’m happy that I have an option not only for myself but for everyone around me too.

It’s impossible to be happy all the time, even if you’re a regular person. For us it’s an uphill challenge for sure. But its so important for you to really try to see things that other people miss everyday. From our position the little things can bring a lot of joy. Normal people walk on by and pass them over because they’re too busy. They’re too busy and missing their lives.We take happy moments, even little ones, and hold on to them for dear life. We know how precious they are. chronic illness happiness sick, why be happy

But I don’t think anyone really understands things the way we do. It’s not that we’re better, just in a more peculiar place where happiness comes in different ways. I can find it just about everyday. If you can’t, look more closely, maybe just knowing that someone is happy that you’re still around is what it takes. If you weren’t here, how would they feel? (You are more special than you think.) Or maybe you realize what good friends and family you actually have, you just forget about it in day to day moments. There’s something good everywhere. It’s up to you to find it.

So yes, I am sick. And I am happy. I’d be happier if I weren’t sick, but that’s not going to happen. So take it as it is and find your happiness, it’s right here.:)my blog missing my life

want happpiness?

How to Find More Happiness or Laughter is the Best Medicine

How to Find More Happiness

how to find more happiness laughter is the best medicine

Is laughter a medicine or a way to more happiness? Of course it is. Laughter really can be beneficial to your health and there’s scientific data to back that up. According to the Mayo Clinic it brings us both :

Short-term benefits

A good laugh has great short-term effects. When you start to laugh, it doesn’t just lighten your load mentally, it actually induces physical changes in your body. Laughter can:

  • Stimulate many organs. Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain.
  • Activate and relieve your stress response. A rollicking laugh fires up and then cools down your stress response, and it can increase your heart rate and blood pressure. The result? A good, relaxed feeling.
  • Soothe tension. Laughter can also stimulate circulation and aid muscle relaxation, both of which can help reduce some of the physical symptoms of stress.

Long-term effects

 Laughter isn’t just a quick pick-me-up, though. It’s also good for you over the long term. Laughter may:
  • Improve your immune system. Negative thoughts manifest into chemical reactions that can affect your body by bringing more stress into your system and decreasing your immunity. In contrast, positive thoughts can actually release neuropeptides that help fight stress and potentially more-serious illnesses.
  • Relieve pain. Laughter may ease pain by causing the body to produce its own natural painkillers.
  • Increase personal satisfaction. Laughter can also make it easier to cope with difficult situations. It also helps you connect with other people.
  • Improve your mood. Many people experience depression, sometimes due to chronic illnesses. Laughter can help lessen your depression and anxiety and may make you feel happier.

 

More Evidence

Laughter has exciting possibilities in conquering pain, (at least a little). According to Psychology Today:

Pain reduction is one of laughter’s promising applications. Patients were able to tolerate more discomfort when watching comedy or receiving a relaxation procedure than those who did not.

And when it comes to intense pain Dr. James Rotton, Ph.D., of Florida International University, reported that orthopedic surgery patients who watched comedic videos requested fewer aspirin and tranquilizers than the group that viewed dramas.

 

hot to find happiness laughter medicine

 

Medical News Today reports that:

Recent advances are knitting together psychology, neurological activity, and our hormonal state. A positive frame of mind really does make us physically better. It’s not all in the mind; psychology modifies physiology. In studies with:

  • Chronic obstructive pulmonary disease
  • Vascular function,
  • Cardiovascular health
  • Laughter Yoga

researchers found that “Participants showed improved immediate mood (vigor-activity and friendliness) and increased HRV after the laughter intervention. Both the laughter and control interventions appeared to improve longer-term anxiety.”

I’m Sold. How About You? Here’s How to Get More Laughter in Your Life

That’s enough medical evidence for me. It’s another route to more happiness in life, and I’ll take that thank you very much. So here’s a few ideas to surround yourself with laughter, use them and your outlook will improve, I promise.

  1. Keep a collection of hilarious DVD movies
  2. Write down the funniest stories from your past; have a glance at them every now and then
  3. Watch funny youtube videos
  4. See my post on happiness here
  5. Take this great advice from The Laughter Remedy, 

 

Get Started Noticing Funny Things

1) Start reflecting about what it means to have a humorous perspective on life.  Talk  to your friends and colleagues about what this means.  These conversations alone will help sensitize you to seeing the funny stuff that’s been there all along.

2) Set yourself a specific goal of finding FIVE funny things every day for the next week (or two).  If I were to pay you $500 for every funny thing you noticed in the day, you know you’d find plenty of things to laugh at—because you’ll be activeley looking for them.  They’re there waiting for you.  Just put looking for them on the “front burner” for one week and see what happens.

3) Look for humor in signs, ads and newspaper headlines.

  • “Dog for Sale. Eats anything. Especially fond of children.”
  • “Bras half off” (sign in department store)
  • “We skid you not” (in an ad for tires)
  • Deluxe Dry Cleaners. 25 years at the same spot (in front of store)
  • A recent report indicated that some college students cannot read or right.  (Newspaper Editorial)

4) Pretend you’re Alan Funt (of Candid Camera fame).  Steve Allen once said,                  “Nothing is funnier than the unintended humor of reality.”   Alan Funt kept a                     generation laughing every week by creating crazy, unexpected situations in order to watch people’s reactions to them.  The humor in that case came from watching the innocent onlooker’s reactions to these situations.  But there are also real weird, nonsensical things that come up in your own life.  So spend a week pretending that Alan Funt has set these situations up for you to enjoy.  Your job is to just find them.

5) Write down the essence of the funny thing that happened as soon as you can. Writing it down strengthens the habit of noticing it.

 

Now Go Find It!!!

So there you have it.  Let me add just one more source of laughter: My absolute favorite comedian George Carlin. (lots of bad language)

So there you have it…

Now go out and laugh today. Try for that good deep belly laugh. The kind that makes tears roll down your face and your stomach even starts to hurt. You’ve got the science behind it all, and some ways to cultivate it in your life. And George Carlin. 🙂 If you can change your mindset through laughter it’s another pathway to more happiness. And we all could use a little more of that.

want happiness

Want Happiness? The One Thing You Must Stop Doing

 

 

I think we all feel that we have lived two lives; the one before we got sick and the one we live now. And while its wonderful to look back on fond memories and happiness then, they also cause a problem. On particularly sad days I often find myself reliving memories from my old life. I play a little video in my head where I am laughing so hard I have tears in my eyes while my son is playing with the dog. I remember having special nights when we would stop at Taco Bell then grab a video at Blockbuster and go home for a movie and popcorn. I was so happy.

It was the epitome of happiness when I look back at it. And then I start to cry. Suddenly my fondest memories are my saddest thoughts. It’s almost as if my brain wants me to feel worse than I already do. Things were so much better then….so much better than they are now. But is that really true?

 After thinking about it for a while I realized what I was doing. And it was very detrimental to my emotional health.

What wasn’t popping up in my head was what my life as a whole was at that time. Some of the best times I’ve ever had were happening in the midst of my whole life falling apart. At those times I was getting sicker and sicker. My business was starting to crumble. I was barely able to work. My marriage was beyond salvation. All in all, one might look at that time period and label it as one of the worst periods of my life. So when I keep looking back at the good parts that happened and wishing I could go back to them I was leaving out all the bad stuff.  I really didn’t want to go back to that time in my life.

Happiness?

I realized I was over glorifying it. I kept whining about how wonderful my life used to be when actually it wasn’t. In truth, my life is better now. I’m in a good stable marriage. My son is happy, healthy and moving forward into adulthood. This actually is a good place to be despite my illness.

Fantasizing and glorifying the past only serves to make us sad. The more I yearned for those little blips of joy, the more depressed I became. Now that’s not to say that I should forget them. They are absolutely wonderful to have, and I don’t ever want them to fade from my memory. But its important to keep them in context.

Those moments were fantastic; my old life was not. It also helps me understand that I am having lots of those little moments still, and I’m sure I’ll look back at these fondly as well.

The One Thing

For the most part I think I remain happy most of the time. I’ve learned to let some thing slide, I value my family more and I can find a little humor in just about anything. Most of that is because I became chronically ill. It suddenly seemed very important to take a hard look at my surroundings. I found the one thing that we should be doing:

Stop over glorifying the past.Click To Tweet

Keep the laughter and happiness you had. Lose the idea that everything was wonderful and close to perfect in your past. Because chances are, it probably wasn’t. Good things and bad things happen all throughout your life and you will never have a segment that is picture perfect. Fixating on an idealized past is unrealistic. And it prevents us from finding happiness here and now.

Love your past, cherish the memories and start looking for the good ones you are making right now.

 

Stay Happy

-Kate

 

 

 

 

Laugh Everyday

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