Hello Dazzle! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I just wanted to talk about the catch 22 of chronic illness. What’s the catch 22? How difficult it can be to judge how much or which activities are going to be alright and which ones are going to cause problems. One thing that almost every provider and most spoonies talk about is how important it is to manage and prevent your symptoms. What isn’t talked about enough is that this isn’t a simple equation that’s all worked out for us that will determine how to behave in order to achieve the best outcomes.
My frustration on this point is two fold. First is that it is just incredibly frustrating to never be completely sure what I should be doing to best care for myself. I would love to have all the answers and know with certainty that I was doing what ever would lead to me having the best possible medical outcomes. Life doesn’t work that way and chronic illness isn’t that clear cut. The thing that frustrates me far more is the way that no matter what I choose to do to care for my body, I am blamed for the outcome. The blame comes from both my family and my medical providers. It is incredibly frustrating because I really am doing the best that I can every day. Truth is that more often then not I have to make educated guesses based on what’s worked in the past.
I had an appointment this week that was close to my house. The weather was very nice. Exercise is important. I was in no hurry. I decided that I would walk home from my appointment. I walked slowly and it wasn’t a very long walk. I was wearing the shoes that are prescribed to me by podiatrist. Yet, I still ended up with shin splints. This is because I have flat feet, a connective tissue disorder and am not well conditioned. Shin splints is the commonly used name for the clinical injury called tibial stress syndrome. This is an injury that is caused by an over use of the muscles that causes an inflammation response. As long as a person stops the activity and takes care themselves, this injury isn’t serious. But if this injury is ignored and activity is continued it can lead to stress fractures of the tibia bone.
When I am not being as active as providers think that I should be in order to maintain my health, I am encouraged to exercise more. Walking is almost always the activity that they encourage since it is consider such an easy thing to do. What they have forgotten is that I have chronic illnesses that make walking complicated. Not only do I have to worry about getting shin splints because I have flat feet and a connective tissue disorder, I also have dystonia that is triggered by walking. That means that walking can cause me to loose control over my body movements which puts me at risk for falling and being injured from that fall.
When I choose to go for the walk, there is always a chance that I will get shin splints or that I will trigger my dystonia which can cause me to fall. If I go for a walk and either of these negative outcomes happens then it is said that I was pushing too hard and it is my fault that I was injured because I was exercising when I shouldn’t.
In the end, I am blamed for any poor outcome that happens regardless of how I chose to manage my health. If I go for the walk, there will be episodes of shin splints and falls. There is no way for me to completely avoid these injuries. They are a risk I have to take if I am going to walk. Yet, because I chose to go for that walk, it is my fault. However, it is also my fault that I am over weight because I don’t exercise enough. This is the catch 22 of having chronic illness.
There are never any perfect answers. We are always forced to make choices based on what is the lesser of the evils rather then the perfect option. Despite that truth, it is still considered to be our mismanagement of our symptoms and illness whenever we have an adverse outcome. Doesn’t matter that it is considered normal to have these kinds of set backs with chronic illnesses. Doesn’t matter that there are no perfect care plans that keep all the symptoms and problems in control. It certainly doesn’t matter that managing a chronic illness on a day to day basis is really hard.
We are blamed when we have adverse health outcomes.
This week for me has been a struggle as I try to recover from the shin splints. The pain really sucks and makes walking even harder than it already was. Plus, I get to listen to the internalized monologue of all the healthcare providers I have had over the years. Doesn’t matter that I know I did my best and that these things happen some times. I still get to listen to them in my head, telling me how I should have done things differently. Because that’s the worst part of all of this, it becomes an internalized narrative after you’ve heard it for so many years.
Since about 60% of Americans have chronic illness the odds are rather good that someone in your life has a chronic illness. Even if you don’t know they have an illness they could still have it, because they might not have told you. Keep that and how complicated it is in mind before you comment on someone’s health outcomes. Please, don’t cast blame. I am certain that none of us want to have negative health outcomes and that we are all doing our best to prevent them. Each of us face challenges to our wellness and sometimes those challenges aren’t obvious or even make sense to those who are looking from the outside.
Please, be gentle with each other. Things are hard enough as it is in this life. We don’t need to make things harder on each other by adding the burden of guilt and shame. Instead of casting blame, consider offering emotional support or helping them problem solve for the future.
Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!