Balancing Positivity and Realism When Facing Chronic Illness

Eleanor Bird avatar

by Eleanor Bird |

Share this article:

Share article via email
honesty

One thing we hear a lot about while living with a serious chronic illness is the importance of staying positive. But what does that mean?

The “importance of positivity” is a common trope both inside and outside the chronic illness community. While a lot can be said about approaching an illness with a glass-half-full mindset, this type of rhetoric can be grating for those of us dealing with serious health problems.

One aspect of this type of comment that can be particularly hurtful is the idea that our health is in our own hands, and if we could just maintain a positive mindset, we’d stay well. Certain health influencers play into this by implying that mindset, along with adhering to peculiar diets, taking up yoga, and turning to herbal medicine, can be some kind of miracle cure. 

It’s tempting to be swept away by this type of approach, because people living with an incurable illness understandably want to believe that they can do something about it. But it can be incredibly disheartening not to see results. If I receive test results showing that my health has deteriorated, was I not thinking positively enough? If I eat something other than kale, am I responsible for worsening? (I’m exaggerating — don’t only eat kale!) 

For those living with pulmonary hypertension, our overall wellness is largely out of our control. While lifestyle changes can ease symptoms and have a small impact on disease progression (of course, a small impact can make a big difference to someone battling daily symptoms), we must deal with the hand we are given. I think it’s ill-advised to suggest otherwise. 

I also worry that the “always stay positive” mentality leaves no space for grief and natural reactions to incredibly difficult circumstances. I know that occasionally, I have received bad news about my health, causing me to become distraught and anxious. I found myself wondering: Am I supposed to just snap back into being positive straight away?

I think it’s OK not to always be positive. I think it’s acceptable to feel down about all the difficulties we face. I think perpetual optimism would be a rather strange reaction. I’ve found that in processing my diagnosis, it’s been important to be realistic about what I’m up against. It’s also been crucial to allow myself to acknowledge my feelings in response.

Then again, realism only gets us so far. We also need hope. We can’t let ourselves perpetually worry about the worst-case scenario. Sometimes we have to let ourselves imagine the best-case scenario, too.

I think this commonly used PH motto sums it up perfectly: “No cure, only hope.”

***

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Comments

Dan avatar

Dan

Hey, so I used to have Idopathic Pulmonary hypertension, I say used to because 2 years ago I was sick enough for a transplant (although I certainly didn’t feel that way and was working full time up to TX and maintaining exercise etc). I’d agree that enabling the grief is part of the process but it’s what you do with that grief is important. Sure positivity seriously helps but it’s the fight that keeps you alive and gets you through the other side. You remain positive when the going is good, but when you see the negative results or the declining health have a little cry and then use it as your motivation to pick yourself back up, keep pushing and don’t give up. It’s almost a self fulfilling prophecy. Lifestyle changes might work, you might find yourself getting better and you might not, but the time when you believe you’re unwell and give up that fight, is certainly the time when it will get worse.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.


A Conversation With Rare Disease Advocates