Coping with Chronic Undiagnosed Illness: A Partial Guide

I struggle.

It’s no secret.

There is something going wrong with my body.

I have no answers--only long lists of questions, fears, worries…

I want nothing more than to walk my path with Grace. But sometimes it gets really arduous. Sometimes I cannot find a light. There is only darkness, a place where all Hope is gone and all that remains is Shadow. It is a place of desperation, a place where I’m not sure that I can handle feeling the way I do for one more day, let alone the rest of my life.

I am not always successful at hauling myself back up from the Shadows in these moments. But when I feel the sun on my shoulders again, when I feel Grace by my side, I remember things that can potentially help me when I stumble. And I will stumble again.

Here, then, is a partial list. I write it in the hopes that it will not only help me remember to walk in the Light, with Grace, but perhaps also help some of the millions of others living with chronic undiagnosed illnesses:

1. Suit up. (Assuming of course, that you’ve got the energy.) Wear skirts. And dresses. All those pretty clothes in your closet that you have because you planned on having an important job someday. Put flowers in your hair. Get a haircut every so often. And wear makeup, if you like that kind of thing. That way you won’t just be really sick. You’ll be really pretty sick. Because if you are going to spend a lot of time lying in bed or sitting with statuesque stillness on the couch, spending a large majority of your energy on not throwing up or falling over, you might as well feel as good as you can while you do it.
2. Laugh. When you wake up in the morning, even if you open your eyes to discover you still feel as sick as you did when you closed them or when you step out of the shower exhausted because of the effort it took to clean yourself; when you find your legs wobbling like they are made of Jell-O and when you can’t think or speak straight, just Laugh. Share the crazy weird jokey thoughts in your head and laugh at yourself even when everyone else just stares at you. Laugh at how absurd it is that you feel so sick but no one can find a good reason for it, because it is, after all, ridiculous. Laugh even when you feel like crying. In fact, go ahead and laugh until you cry.
3. Cry. Let the tears run down your cheeks and make puddles on your shirt, your pillow, your partners shoulder. Cry because you’re sure that your illness is ruining your children’s childhoods. Cry because neither you nor your family can remember what life was like before you got sick. Cry because you’re afraid. Cry because you’re stuck and have so little hope left. Cry because people you never expected to be there show you astonishing compassion. Cry because some of the people you thought would be there for you aren’t. Cry for all the losses. Let it all out. Cry until your tears run dry and until you are able to let go of all the guilt and shame and anger and fear, even if it’s only a temporary letting go.
4. Be grateful. Thank your family members and caregivers and friends. Constantly. Thank your friends for encouraging you when you find yourself in the depths of despair. Thank them for enjoying the time they spend with you, even when that means (as it frequently does) just sitting together. Thank them for telling their stories and helping you to feel, at least for a little while, like you have a life. Thank your family for picking up all the pieces you’ve had to drop and for being there for you. Thank your kids for their generous offers to let you lean on their shoulders when you’re dizzy. Thank your spouse for listening to you when you whine and cry and tell bad jokes and go over the same old possible-cause-list for the 400^th time even though it leads in the same old circle to nowhere. Thank him for trying to help you find answers. Thank him for not turning away even though it would probably make his life easier. Thank him for not resenting you. Thank him for telling you that you look beautiful when you know you look like you somehow just miraculously escaped from a barrel of fighting monkeys.
5. Know your limits and respect them. Set reasonable goals. Do what you can but don’t do everything. Pick a room in your house and make cleaning it your goal for the day. Or just cleaning part of it. Or just get a load of laundry done so the kids have clean clothes to wear. Or just wash the dirty pan that’s been sitting by the kitchen sink all week. Or just make it from the bed to the couch. It doesn’t matter what it is. Do it and then stop before you are worn out. Just do a little and be proud of the little you do.
6. Connect. Find people who are capable of empathizing with what you’re going through. Find blogs written by others who are sick and undiagnosed and who know how overwhelming and terrifying and frustrating it is to be in this position. Read how they feel, how they deal and let yourself be comforted by commonality. Write them letters thanking them for sharing their stories and providing you a moment of comfort, a sense of being less alone, with the hopes that you can do the same for them.
   
   And most importantly:
7. Believe. Believe that you’ll find a doctor who will know what is wrong and what to do. Believe that answers will come, eventually. Believe in remission/recovery even if you think it’s unrealistic. Believe that people care even though they fail to show it. Believe that even though someone said the complete wrong thing, they had good intentions. Believe that someday soon you’ll have a good day or maybe even two. Believe that you are loved. Believe that your children will be okay, that your husband truly doesn’t resent you. Believe that there is a greater purpose even if you can’t understand what it is.

Believe. And breathe.

With Love and hopefully a little Grace,

Laci