Wednesday, January 16, 2019

Beyond Shame - The Courage of LIving with Chronic Illness

Even though I spent most of my career throughout my 20’s and 30’s working in home health and hospice, I wasn’t able to grasp the reality of living with chronic illness until it happened to me. While this is true for many things in life, it is particularly applicable to those of us that live in a constant state of discomfort, pain and/or disability because of a disease that cannot simply be “fixed.” We struggle to find physicians that are patient enough to treat us, friends that are willing to stand with us during the ups and the downs, and employers that can accomodate our limitations. And that is just the beginning…

Prior to the Traumatic Brain Injury that changed my life in 2011, I had the same “acute mindset” that drives me nuts these days! In other words, you have an episode, you go to the doctor, you fix it, and you recover. Most people can’t imagine a paradigm different from this.

As an example, people asked me after the TBI…”What is your recovery timeline? When are you going to be back to normal?” These questions seemed so strange, as there was no “recovery” from a TBI like mine. My career ended in an instant. My healing trajectory was completely unknown. Although I had a tremendous gift as a result of the accident (I became an artist overnight – I am an “acquired savant”), I lost almost everything in the wake of the injury…including my marriage. Therefore, I had to adjust to a “new normal.”

The best advice that I was given after the TBI was to let go of the person that I used to be, and begin to fall in love with the person I was becoming. That is exactly what I did, and it made my healing journey that much more meaningful.

Fast forward to 2019, and I am now living with several chronic illnesses. Some are remnants of the TBI (dysautonomia, migraines, adrenal insufficiency), some are rare diseases that I had before the brain injury (LEMS Myesthenia), and others are newly emerging on their own (Diabetes and Reactive Arthritis). I have been flattened in ways that I couldn’t fathom before it happened to me over the last two years; but the great news is that I am finally healing! We have found treatments that work, and I am slowly on the path to recovery. That said, it is going to be a new normal, one that is yet to be defined.

For some reason it feels more difficult this time around.

Recovery is difficult; yet it is only made more challenging by the things that people say when they think I don’t notice. The looks from people that see my disability placard, or the comments from people that can’t understand why I have to cancel commitments. These are the encounters with people that that don’t get it. I could lie and say that it doesn’t bother me, but the truth is that I have to consciously work at letting it go.

I know I am not alone in the shame that I feel when I run across the looks or the whispers. Most people who live with chronic illness have heard it all – “She’s just being dramatic. Why can’t you just snap out of it? It can’t be that bad. You know, I get the sense she’s just looking for attention. He’s making it up. Why does she have to talk about it so much?”

Addressing this directly, there’s a reason we have an equal protection clause for people with disabilities. It’s because our culture is messed up when it comes to issues related to chronic illness and disability. Not only do people not know how to show empathy and/or support people living with chronic illness, but our society has a tendency to judge those with illnesses.

From doctors to employers, family and friends, the idea that people are making up symptoms for attention is astounding to me. Furthermore, the notion that people would go on and on about their chronic illness in the public eye because they want people to feel sorry for them is even more strange. Shame is placed upon those that are sick as if to say – “Your illness is making me uncomfortable, so I wish you would stop talking about it.”

Just like anything else in our culture, people who are chronically ill or disabled should not be shamed into hiding their illness in order to make other people feel more comfortable. Sometimes we can’t hid it, whether it’s assistive devices, mobility aides, or perhaps the extraordinary swelling that comes from massive solumedrol infusions. In my case, it’s all of the above along with a port in my chest and the IVIG treatments that take huge chunks out of my life.

Believe me, I am aware of the discomfort of those around me, and I would prefer to hide my illness. I don’t want this kind of attention. I certainly don’t want to be dependent on others for rides on IVIG days. That said, this is the path that lies before me, and I am going to courageously walk it because that is how I heal. Furthermore, I am teaching my daughter how to build community, and that we are not alone in this world, and that is just good parenting. So we keep going….

This brings me to my final point – most of us will experience chronic illness as we age. It could be living with cancer, autoimmune disease, diabetes, heart disease, and so much more. Things that used to kill are now becoming chronic. How would you like to be treated if your body suddenly began to malfunction? Imagine how you would want your friends, family, loved ones to care for you…and that is the beginning of learning what you can do for others.

In my case, I have lost relationships. I think this is true for many people with serious chronic illness. In spite of these losses, however, I am consistently amazed at the goodness of the people in my life. My tribe now is among the most beautiful creations I could have ever imagined for myself and my daughter. It is through their loving support that I have learned the most important thing – I used to think that I was strong when I didn’t need help. I have since learned that there is great strength in the vulnerability of asking for help, having people in your life that will authentically say Yes or No, and knowing that I can trust in that truth. This is life in community with others. It’s REAL and I am deeply grateful.

Thus, if there is one thing I can pass along from my current life with chronic illness, it is this – we don’t need to live in isolation. We don’t need to be perfect to be loved. There is value in the vulnerability required to be a part of a real community. Finding that community is among the most important things that we do as we grow older….AND….I will continue to remind myself that those who would shame me or ask me to be anything other than who I am are not my people…and then let it go.

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