Last week I began telling you about my friend Kait. She’s pretty awesome. That being said, here’s more of what she had to say when I asked her about chronic illness and trauma.
3. How have you dealt with the distress caused by chronic illness? What are some of the sacrifices you’ve had to make along the way, and how did having to make those sacrifices make you feel?
I haven’t always dealt with my MG well. I have engaged in self-destructive behaviors through disordered eating. I was angry at God for a long time. I didn’t understand how the God who created something as beautiful and delicate as a field of wildflowers could also allow something so ugly into His creation. I didn’t have the emotional capacity in my anger to understand that something that is created as “good” can have “bad” direction, and that those of us who suffer are often caught in that tension. I think that tension is what gives me hope.
I gave up music because my hands didn’t work well enough to play the piano or viola anymore. Let’s be honest, I was terrible at the oboe so that one didn’t hurt very much to give up. I was out of school for 2 years, and was on a modified schedule for 3 years after that. I missed a lot of my junior year of college, flying back and forth between school and my neurologist/hospital for treatment. I gave up the chance to study abroad. I’ve also lost a few friends along the way who didn’t understand, or who thought MG wasn’t real.
I went into remission in 2008 and had a relapse of symptoms in 2010. Somewhere after that relapse, shortly after having to withdraw from my study abroad program, I promised myself I wouldn’t let MG make me miss out on anything else. I was angry again.
Making that promise to myself wasn’t helpful because no matter how much I plan, no matter how much I rest, no matter how well I’m doing on my medication dosage, I will still miss out.
That is part of life, especially with MG, and it was self-destructive to allow myself to be in that cycle of frustration:
missing out – anger – upset – more symptoms from emotional stress – more missing out
Now, after 14 years with MG, I still have a hard time making sacrifices due to my condition but I have less anger and bitterness. I also have less resentment towards other people who do not understand what it is like to live life with a chronic illness. I have learned that my bitterness towards others isolates myself more, which exacerbates my feelings of being left out. Because I am literally leaving myself out.
4. What would you say to someone who is struggling with the psychological effects of being diagnosed with a chronic illness like yours?
The hardest thing for me to learn was how to ask for help. I would let myself get to the worst possible place, not say a word, and then be upset that no one offered. The problem with chronic illness is that it isn’t always visible. Actually, it usually isn’t, or it is only visible to the trained eye.
Ask for help. Be vulnerable. Allow yourself to be heard. Your story is important, and it will be heard.
You may not find support from the people you want it from. I know what that disappointment is like. But you may be surprised where you find the support and kinship. Don’t take that for granted. I have seen three different counselors over the last 7 years. Not constantly, but in times when I needed someone to truly help me deal with the darkness. I was lucky to have a handful of friends and my mom and sister to encourage me to seek professional guidance.
Also, don’t settle for sub-par care. Don’t be afraid of “breaking up” with a doctor or counselor or even just a confidant if their advice is toxic.
5. What scares you the most about your illness?
I try not to go to the dark places too much, but I do have my fears. When I relapsed in 2010, I remember crying into my mom’s arms and asking her if I would ever be able to be a mother. I’m afraid that the medicine I’m on will make it hard or impossible for me to have kids, or if I do, they’ll have complications from my antibodies or my medication. I’m afraid of my medication causing cancer, because I know it’s a risk. I’m afraid that my medicine will stop working one day. I’m afraid of crisis, something that I haven’t experienced yet (MG crisis is when the diaphragm is affected by the disease, and you stop breathing). I’m afraid of dying before I live the width of my life here. I’m afraid of ever being without health insurance. Sometimes, I’m afraid of being different. Other times, I’m afraid of how complicated life with MG is.
6. What gives you the most hope?
Art is my healing process. The only thing I could really do when I was so sick was doodle, paint, and type. I did a lot of crafts as I felt able and it was therapeutic. I wrote a lot and listened to audiobooks.
I still managed to make it through 4 years of art school even with MG rearing its ugly head in the middle of it. My artwork is a product of the intimacy between making and healing. It is about process. The act of creating became one of the most important parts of my treatment.
My struggle with MG has informed my worldview and perception of self. I am fascinated by the intimacy of strength and fragility, permanence and transience, and ambiguity and certainty. They are, in each instance, each two sides of the same coin. One can’t exist without the other.
I hope I keep making, whether it is in painting, photography, food, flowers, etc., that I continue moving forward in unpacking how “the self” relates to community and the very idea of authentic identity.
I find a lot of hope in Travis, my husband. I didn’t think there would be a person who would want to or be able to take on MG. I’ll quote myself here,
“There was a time not long ago when I couldn’t imagine inviting someone in to my life to love me and know me, to take my broken body as their companion. I couldn’t imagine sharing the pain of losing remission, of residual symptoms, of days hooked up to intravenous medication, and how awful some side effects can be. I couldn’t imagine how amazing and wonderful the man would be who would want to take this mess on…. who would dig through the dirt, research medications, motivate me, and do everything he could to make me stronger. I couldn’t imagine how he could feel knowing that things I once loved to do were just out of reach. I couldn’t imagine the patient servants heart that God was preparing me to share my life with.”
We had our difficult times, and Travis was afraid. We sought out a lot of premarital counseling to learn tools to help us manage MG in our lives together. The fact that he would take on this hot mess and love me and advocate for me IS hope.
I also find hope in cooking for people I love, enjoying good wine, attempting yoga, traveling when I can, doing acupuncture, taking care of my rescue dog, participating in online support groups, and talking to people that want to raise awareness for invisible illness.
Learn more about Kait at her website.
MG walk in Columbia is Saturday March 28
Cathy and Kait circa 2009
caregiving, chronic illness, illness, MG, MG Walk, mg walk columbia, Myasthenina Gravis, rethink trauma, spoonie, support, Trauma