How to make peace with your chronic disease

Lina
5 min readMar 14, 2021

Embracing the 80/20 approach can get you some peace of mind-not only in work, nutrition and family matters, but also when it comes to health. Especially when living with a chronic disease, one’s own expectation to feel 100% awesome all the time is doomed to be disappointed. So let’s take a look at what happens when you aim for just 80%.

If you are chronically ill, you actually have two enemies that challenge you: The pain and the suffering. And as Jon Kabat-Zinn, the founder of Mindfulness-based stress reduction (MBSR), says, you cannot fully control the pain but you can manage the suffering. I discovered on my personal journey that the 80/20 rule can help a lot to get you into the right mindset to manage that suffering. In a nutshell: Accepting that you feel great 80% of the time with 20% of your effort is a realistic way to stay sane.

A pink peony in full bloom with its green leaves against a wooden background
Pink peony flower in full bloom

Taking your health for granted

When you are still in your teens or twenties and you belong to the lucky majority who is healthy except for a cold every now and then, you take it all for granted. You take your body for granted and don’t question its basic functionalities. It’s a machine that functions and doesn’t get much attention. Of course, you pay a lot of attention to its exterior, optimizing hair and make-up, toning the muscles, flattening the parts that need to be flat and pumping up those that don’t. But you never question the inner mechanics of it all and the general functioning of your many bones, joints and organs. You are at 100%! And let’s be honest: You have other things to worry about. One of those things is probably sex: whom to have it with, how often to have it and a lot more. I don’t want to get into those details. My point is, you worry about a lot of things but you never realize how great it is that your body is actually capable of experiencing intimacy with someone.

And then suddenly, it cracks.

When your comfort level drops from 100 to 0

For me, everything changed from one day to another. The pain started and I was closed down for business.

What began in parallel was my personal scavenger hunt from doctor to doctor, searching first for a diagnosis, then for a cure and when I learned that there is none: for something the doctors call the ‘management’ of the disease. My beast has a name, it’s called lichen sclerosus. It is a chronic skin disease caused by autoimmune reactions. It comes in episodes and the objective is to get those episodes shorter and further apart. I will never be free of them completely.

The fight against the pain took me one year of time and energy and also some money. What really dragged me down during that year wasn’t actually the pain, it was the suffering. This suffering was caused by my wish to be completely pain-free again combined with a lack of hope that this would ever be the case. I was trapped in a downwards spiral of imagining worst-case-scenarios of how this condition would destroy my body and my relationships.

The big mistake in that thinking was my assumption that there is only a pain-free OR a painful life. Black OR white, good OR bad. And I believed that if I was in pain, I couldn’t enjoy any other area of my life because it felt all bad as long as there was this disease.

A little house altar with a Buddha statue, a candle and a pile of rocks on a wooden table.
A little house altar with a Buddha statue can be a nice reminder to keep calm in difficult situations.

Get your peace of mind back with the 80/20 rule

After a couple of months, I found a dermatologist who could help me. She suggested a new treatment which allowed me to shorten the episodes and have less of them. As soon as I got over the 50% threshold and had more good days than bad ones, not only was my physical situation much more bearable, but something else happened on a psychological level as well: I recovered my hope that I could still have these pain-free, ‘normal’ days (even weeks and months of them), and this hope slowly pushed the suffering away.

Now when the pain comes, I suffer less. Firstly because I know how to treat it, but secondly-and more astonishingly-because I tell myself that it will go away, it’s just a phase.

So in the end, my experience fits pretty well with the 80/20 rule:

  • 20% effort: It took me some work to pin down the 20% effort that really helped my disease. As described when looking at 80/20 in other areas of life, there is no way around that. I had invested time and money to do my research, identified the right experts and medication. But then I stopped-I did not want to spend my entire life seeing the gazillionst doctor, throwing money into over-priced laser therapy (ouch!) or lapse into shamanism. All of that meant I was focusing on the pain and thus gave the suffering a leading role in the play of my life.
  • 80% result: What I understand now is that it is fine to stop at a 80% solution because 100% is out of my reach, anyway. As in so many other areas of my life, I can deal with 80% perfection. And in this special case, I can deal with it because when I’m having one of those 20% bad days, I know that if I make it through that day, I will have four good ones in return. As a consequence, I no longer put any energy into getting rid of those 20% bad days but spend that energy on things I enjoy.
Infographic showing how to manage a chronic disease like Lichen Sclerosus and what to do.
80/20 is my way to find ease while living with my chronic disease.

The funny thing is: Similar to many other autoimmune diseases, I have the feeling that mine is also somehow linked to stress. So it was a vicious circle I was in: Pain causes stress which causes more and longer pain which causes more stress. By embracing the 80/20 rule, I have managed to turn it into a virtuous one: I pushed away the suffering with hope for better days and thus eased my mind and my body. Today, I am just grateful and happy about the good 80% days and spend the remaining 20% knowing that it will be better again. And this knowledge makes all the difference.

Do you think the 80/20 rule would help you with your own demons? How have you learned to cope with similar experiences? If you’d like, please leave a comment.

Originally published at http://8020perfection.wordpress.com on March 14, 2021.

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Lina

Perfectionist by nature and by nurture I like to explore how an 80/20 approach can make my professional life and my personal life much more fun.