Embracing Illness

I was thinking about the language we use when overcoming health issues. I have some problems and feelings about my health that have made me feel really depressed. I’m normally a very happy person, despite my chronic illness. So why do I feel so angry and cranky and feel guilty?

I have an inherited disease, Ehlers – Danlos Syndrome. It makes my joints loose and I sublux (partially dislocate) joints easily – everything from ribs to shoulders to neck to knees to pelvis to spine. Often, it’s several of them at once!

I don’t hurt myself by snowboarding, doing yoga or running. I do this while sitting, sleeping (especially sleeping) and doing normal activities. It makes me tired (like chronic fatigue,) gives me pain (like fibromyalgia,) and hurts (like putting your back out and twisting your ankle at the same time.) This condition isn’t going to kill me. In fact, I'm healthy in most every other way so I will probably live a long life like this. There’s no cure for EDS and little research is being done to look for one.

But there are so many people like me who inherit diseases or develop conditions that are not fatal but affect their lives every day. They may or may not get support and understanding from their medical community or even from their loved ones. There may or may not be a search for a cure during their lifetime. But they need to live with their illness everyday.

For many of these diseases, there’s no “Race to the cure,” “Fight for a cure” or even a chance to “win!” There is just a desire to get through the day and try to look on the bright side about tomorrow.

Depression is common among people with chronic, incurable conditions. While there are lots of factors that play into depression, it's human to get depressed by trying to win at something that can't be won or overcome something we are not meant to overcome! The mere words race, fight, win, battle, and cure can elicit despair.

Chronic illnesses are more like mountains: not meant to be climbed, conquered, and heroically taken. Instead, we are meant to look at the majestic nature of the mountain, admire its beauty, and look in awe on it's fortitude. We are meant to accept that the mountain is just there! It casts shadows, reveals sunlit slopes and curses us with terrifying avalanches.

You can't fight a mountain! You must simply accept that this beautiful, scary, looming mountain is not going to go away and live your life around it.

When you think about a race or a fight, these events are not restful. These require huge expenditures of energy and resources. They are also meant to be done for a short amount of time. They are not sustainable

If you are having a heart attack or have been in an accident, there is a short-term battle to fight for your life, a race against the clocks to stabilize you. The human spirit is amazing and these bursts of determination and activity can do incredible things. But these are short term activities.

After the battle to survive has been won, our language needs to change to more healing and nurturing language. This is hard to do where our medical world is full of war and sports analogies.

But doing battle on our health and trying to conquer a condition is not a healing attitude. It also rarely takes into account the physiological aspect of healing. The mere act of fighting or racing means that we are in hyper-survival mode – a place where survival instincts pump chemicals into our system. This is meant for a very short time and is detrimental over the long run.

For many of us, our health condition is: unconquerable, unwin-able, not overcome-able. For us (and perhaps for patients with curable diseases too,) we must learn a different language.

I came to the conclusion that I need to come to peace with my condition and stop trying to conquer it. I can't be racing, or conquering, fighting or trying to win.

Instead, I have made a commitment to embrace my illness. I will now accept and make peace with my body. I will try to stop trying to fight and instead build a new life that I love around my "mountain."

I wrote this a while ago.

I must say, thinking this through actually changed my life quite a bit.

I'm not cured. I still have rotten days! My body still gives me pain each day and disability some days.

But I have embraced my health and body in a positive way - something I had never done. I'm not "fighting" any more. And I truly feel more at peace.

I'm able to put my health into perspective more. There are so many with my illness that suffer so much more than I. And for this, I've become grateful for every day when I can get through the day "looking" normal.

Yes, some days I forget and curse the pelvis that never stays where it should be and the shoulder that hurts all the time and the crickety neck that gives me migraines so bad I vomit bile.

But mostly, now, I remind myself that I am here and enjoying my family and laughing and planning my next trip to Paris.

This epiphany has helped me accept and create a better life for myself.