Happiness

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

 

 

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