- Chronic Illness Growth vs Chronic Illness Limitations - Everything in Moderation.
Chronic Illness Growth
I often see chronically ill influencers talk about how being chronically ill has made them more compassionate and empathetic, morally driven, determined, confident in their identity and so forth. These are all great things that going through the transformative experience of a severe illness can give you. However, the majority of influencers with this view are not housebound or bedbound (or have been so only intermittently).
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Chronic Illness Limitations
In contrast, permanently housebound and/or bedbound patients much more often talk about loss and limitations. We talk about their identity being taken over by illness, about losing purpose and will to fight, about how morally bankrupt the world we live in is. These views are much more negative and generally lead to less followers, shares, likes, and views. They are also less beneficial to mental health.
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Incorrect Solution: Promote illness growth over illness limitation mindset.
At first, the answer seems clear, by pushing chronically ill people to identify more with traits of illness growth and less with traits of illness limitation it should improve mental health and chronic illness awareness right?
The problem with this solution is that it ignores the truth: illness growth is relatively fixed in relation to illness severity. Illness limitation is directly correlated with illness severity.
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Chronic illness growth is (mostly) fixed.
Chronic illness is universally minimized and ignored by our society. All chronic illnesses are life-changing. So if you have any chronic illness you will be exposed to the reality of being sick in a society designed for the healthy. It doesn't matter if you have burnout, or arthritis, or Parkinsons, or severe ME. This reality will hit you like a stack of bricks and trigger the process of chronic illness growth. You will gain empathy for those suffering like or worse than you. You will have to learn to focus on your identity and purpose due to having less energy to spend. You will have to learn to uncouple your value from what you can directly do on a given day. This is chronic illness growth.
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Chronic illness limitation is dynamic.
In contrast, chronic illness limitation is directly linked to the illness and level of disability it creates in you. Both a bedbound person with severe ME and a working person with rheumatoid arthritis will be exposed to chronic illness growth. But whereas the person with RA will still have a lot of choice and control over what to do with this growth to improve and change their life, the person with severe ME will not. Their life is far more impacted by illness limitation. They are bedbound, have minimal if any productive hours to choose what to do with, and are reliant on others for care.
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Relative effects explain final outlooks
Therefore, people with a less limiting chronic illness will have a bigger or equal impact of chronic illness growth and limitations. They may find their life improved because despite the new limitations their new outlook has them putting their now 80% of energy into a twice as meaningful life. They may end up with both a more meaningful life and one they had more control in shaping. In contrast, people who have severely limiting chronic illnesses will find that even though they can think of something twice as meaningful to pursue they are unable to do so and in fact also unable to pursue what they used to find meaningful. Therefore they end up with a significantly less meaningful life that is less under their control.
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Correct solution: acknowledge the limits of chronic illness growth
In conclusion, what is necessary is an acknowledgment throughout the chronic illness community that chronic illness growth only benefits patients up until a certain level of illness limitations. This level is different for different people but it definitely exists somewhere between someone working full-time and a bedbound individual. When this is acknowledged, you can then see why not everyone will come to see their illness as positive and why the level of recovery necessary for an illness to change someone's life for the better is different from a full recovery despite illness limitations as a whole being negative. Like anything, chronic illness can have a benefit to personal growth but only in moderation.
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For those posting about chronic illness growth
It is super important to acknowledge that chronic illness growth will only have a net benefit to those who have a low enough level of illness limitation. This is not to say that people with more severe illnesses cannot experience illness growth. But simply that the growth will not be enough to expect these people to "learn to be grateful" or to "appreciate" their illness. People in this position should not be seen as attacking your growth or as less positive people. They are simply facing a different balance of effects.
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For those experiencing severe illness limitations
You don't need to be grateful for your illness. You can wish it never happened to you and still acknowledge the growth it created. You can also acknowledge when personal growth is useless to you due to your limitations. You are not being cynical to talk primarily about limitations when limitations are the primary way your illness affects you. You do not need to try to turn your illness into a positive and you are not failing to do so compared to those you see on social media you are just in a different position.
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Personal growth from chronic illness doesn't always equal gratitude for this life-altering experience. Here's why:
Chronic illness growth is a type of post-traumatic growth where people learn from the experience of chronic illness to make more meaningful choices with their life. This often involves letting go of strict materialist and capitalist structures, valuing experience, connection and presence, and getting more in touch with our personal life goals.
This is a great thing, and is why you will sometimes see posts and articles along the lines of "why I am grateful for my chronic illness." But what about the many people who are not grateful for their chronic illness, have they not experienced this growth?
In general, I argue no. While there may be some people who are not grateful for their illness because they just got sick and only see it as a bad thing, most long-term spoonies have experience illness growth. The problem is many of us experience more illness limitations than growth.
Like the chart shows, chronic illness growth is what you make it to be and you can generally get as much growth out of a more mild illness as a severe one. All chronic pain and fatigue are life-changing. That means almost all chronic illnesses can create growth from this life-changing event.
In contrast, illness limitations scale greatly. A daily pain level of 3 and 10 affects a person in drastically different ways. Being exhausted at work is very different from being bedbound and reliant on care.
Illness growth pushes us to do more meaningful work. Illness limitations stop us from doing all work. If there is growth and minimal limitations the person may do more overall meaningful work. But if there is growth and massive limitations better intentions may be fairly useless.
So please, do not assume those with a different view on gratitude and appreciation of illness do not know about chronic illness growth. We simply lack the resources to put it into action.
