10 Things Chronic Illness Has Taught Me

Hello Dazzle! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I want to talk about some of the lessons that chronic illness has taught me.

1. I cannot rely upon my body.

We are all born into a meat boat that we must sail through our lives within. Everything that we experience in this life is through this vessel. And it will constantly change as we travel. Normally, these changes happen over years. Coming so slowly that we struggle to tell when those changes really began. But chronic illness changes your body dramatically and quickly. Sometimes, the body that you woke up with just isn’t the body that you go to sleep with at the end of the day. Being aware of the way that our bodies betray us has made me have a greater empathy for the elderly who share in the experience of the betrayal of the flesh.

2. Rare things can happen… Repeatedly.

It is easy to fall into the trap of believing that something being uncommon or rare will never happen to you. If it’s one in a million, it’s not likely that you will be the one. But chronic illness has taught me that there is always that one and it has to be someone. And that someone can always be you.

My brain is driven by crazy dreams and wild passions. I grew up hearing that achieving anything with them was unlikely. Chronic illness has taught me that I am already the one in five thousand simply by being born with the genes for Hypermobile Ehlers-Danlos syndrome (hEDS). If that uncommon thing can happen to me, why not achieving greatness? After all, lightening does strike the same place twice.

Chronic illness has also taught me that statistics are misleading. A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time. According to the National Institutes of Health (NIH), there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans. This equates to 1 in 10 Americans, or one on every elevator and four on every bus. Seems that having a rare disease isn’t really that rare. And about 5% of patients have more then one rare disease, which is 1 in 20.

While these numbers can seem depressing, they also represent hope. Because they have taught me that if we keeping moving through our lives with purpose and intention, we are likely to achieve something great. Sure, we are also going to fail a lot along the way. But there is plenty of room for everyone to have a rare moment of greatness. Why do I believe this? Each single event of greatness might be uncommon or rare, but broadening the view to all of the possible events of greatness changes the numbers to something rather common place.

3. How to give grace to others.

There are times in life when a person that I am engaging with comes at me with all knives. In those moments, I have learned to afford them grace. This is because I have been there. There have been days that I have run out of spoons and have come at the world with knives because it was the only silverware that was left in my drawer. On those days, I have never been my best self. When someone comes at me with knives, I start with the assumption that it is the only silverware available to them at that time and that they are not presenting their best selves.

4. Who I am.

People often ask me how I can live with chronic illness. I do it because I have a stark choice to make every day of my life. I either continue to live with chronic illness or I die. Facing this choice every day has also forced me to explore every nook and cranny of who I am. I have learned what kind of person I am when I am stressed, tired, scared, angry, confused, hopeless and every other emotion. Knowing how you behave in the difficult moments in life teaches you a great deal about the nature of yourself. Having chronic illness means living through many difficult moments.

5. How to embrace the moment.

Knowing that my body is unreliable and that it can betray me at any time has taught me to grab a hold of the moment that I am currently living. Chronic illness has taught me that I cannot count on always being able to do the things I am doing today. This means that if I want to reach a goal or a dream that I must do so today. This has given my life a urgency as well as a sense of nowness. The only time that I can effect change in my life is now.

6. Gratitude.

I have learned the value in doing my best to find joy and happiness in even the small things that life presents me. Appreciating the goodness in life and the things that your body can do has allowed me to hold onto the light and beauty that this world has to offer.

7. How to be more comfortable with uncertainty.

The truth is that life is nothing but uncertainty. Chronic illness denies me the possibility of denying this. Every day that I get up in the morning, I don’t know how much I will be able to do that day. Will it be a high spoon or a low spoon kind of day? There are things that I can do to influence the number of spoons that I start my day with, but there is much that is out of my control as well. I don’t get to decide if the pollen or mold counts will be high that day, but how high they are will determine how much I struggle with my Mast Cell Activation Syndrome (MCAS).

Being more comfortable with uncertainty isn’t giving up and letting life take you where ever it wants without any direction from you. Rather it is about seeing that there are always things that are beyond our control and limits to everything. Having a positive life outlook can improve overall medical outcomes, but it cannot cause your body to regrow lost limbs nor can it heal you from chronic illness. Being comfortable with uncertainty is learning to accept that you lack complete control of your life while taking full command of the areas in your life that you do control.

8. Facing mortality.

We all die. Yet, we are not capable of imagining what not existing would be like. This often leads our brains to believing that others die, but not us. My illnesses have forced me to face my mortality. There have been times that my illness symptoms have threatened my life. Every time I’ve had anaphylaxis, I have knocked upon death’s door. While I cannot imagine what it would be like to be dead, I can imagine what dying is like. Living through this has made denying my mortality impossible and has added to the importance of embracing the moment.

9. Respect and love do not require understanding.

There is this strange idea that someone has to understand you in order to love or respect you. I’ve learned that this isn’t true. Having a chronic illness has made it impossible for many people in my life to fully understand my lived experience. But I have also been blessed with amazing people in my life. They have taught me that you can give space to people who you don’t understand and that you can accept that those parts of them exist even though you lack understanding. These people take my reports of my lived experience at face value and abide by the boundaries that I set even if they do not understand the need for the boundary. They allow me to be what ever I am in that moment, even if it isn’t the same as when they saw me last. I’ve decided that this is what real love looks like.

10. Life is impermanence.

Nothing lasts forever. No matter how good or bad I am currently feeling, it will pass. I know this with certainty because I know that nothing can last forever. Thus, my symptom flares will end. My joy will ebb and flow like the tide. Which means that not feeling it right now simply means that the tide is out rather then joy having been lost. Because that tide will come back in and I will again feel joy. All human emotions are like this, coming and going into and out of our lives. Sometimes they mix together with complex eddies or under currents and other times they come in a single huge wave of feeling.

Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like my rambling then click on that like button. It really does help! Until we talk again, you take care of yourselves!