In an earlier blog I wrote about different kinds of trauma related to abuse and grief and loss. In this blog I want to address the trauma that comes from having a long-term illness or injury that causes life-long changes as a source of trauma. When I speak of illness, I mean long-term illness such as Lupus, Chronic Fatigue, Fibromyalgia, Cancer, Rheumatoid Arthritis and any other autoimmune disease; by injury I mean stroke or other traumatic brain injury, heart attack, or even surgery.
Often the news of our health changes comes suddenly; you are no longer healthy, no longer invincible. The trajectory of your life has been significantly altered. Men and women in their late 30’s – 40’s get the news they’ve had a stroke or that pain they’ve been feeling is actually cancer. Or maybe you’ve been struggling with various symptoms and you finally get a diagnosis of a chronic illness.
Those I’ve spoken with have talked of the incident or diagnosis as one thing, and the life adjustments that they make as another thing. The initial news of a diagnosis comes as a shock, the heart attack or stroke is at first baffling and scary. Memories of past traumas you thought you overcame now come back. This is puzzling and disturbing. As the new reality begins to sink in, fear and depression soon follow. There’s this strong determination to return to your previous functioning, when it doesn’t happen, discouragement sinks in. How long the discouragement lasts is up to you.
My own journey
Let me tell you a bit of my story so that maybe you see yourself in some of this. Maybe something like this has happened to you or a loved one.
Over 30 years ago when my husband, Richard, was in his 30’s he had a stroke. I had no idea what was going on and took him to the doctor because there was something wrong with his eyes and his back hurt. We were initially treated with some disdain because he looked just fine. Richard had none of the stroke symptoms we get warned about now. Thankfully, as the doctor continued his examination, he realized something was wrong with my husband’s eyes and his ability to see. Appointment after appointment, test after test they confirmed it was a stroke. While it was a relief to know what it was, nobody warned us about the emotional toll it would take.
When something that drastic happens especially in the brain, emotions go off-kilter. The man I knew who thought nothing of getting up in front of people to act in a play had disappeared. He wasn’t even emotionally up for going to church. I went alone. Since his eyesight was off so was depth perception. I took him for walks around the block so he could get out of the house and regain some balance. I hoped it would also lift his spirits. I didn’t know to ask about physical or occupational therapy. Despite the difficulties he found a job that required him to do a lot of data entry; it became his occupational therapy. His ability to feel his fingers had also been affected; with his new job he was able to retrain his brain/finger connection. His sense of taste and smell were off and his eyes were sensitive to light. For years he had to wear sunglasses even indoors and on foggy days. People teased him about it, because he looked just fine. It took years to get back most of what he’d lost. Even now he has to make adjustments.
How to be a support for yourself or someone else
As I related earlier, some of the medical field couldn’t help us, and sometimes friends didn’t understand. Others can be insensitive and not realize how harsh they sound. It felt very lonely at times. Maybe it’s the same for you.
People with long term chronic conditions may also look just fine, but there is brain fog, fatigue, emotional sensitivity and irritability. Some of that has to do with the sense of loss; some of it comes with the physical changes in the body and brain. Learning to accept your limitations while trying to return to better functioning is a like walking a tightrope. There are down days when it doesn’t feel like there’s any progress, there may even be days when all is good. Bad days don’t mean that you’ll never get better nor do good days mean that you are healed; it simply means that one day wasn’t so good and that today was a good day. Give yourself grace.
For those of us who walk beside someone stricken with illness or injury it is easy to forget that our loved one has struggles even if they look just fine. It is tempting to want them to be as they were before, but even if they return physically (most won’t) they’re forever changed emotionally. If they don’t “waste their difficulty” by staying in depression and discouragement they can learn to be grateful and acknowledge that things are hard. Those two attitudes are not mutually exclusive. As a support person you can be part of the healing by encouraging them, but scolding or shaming them for their down days is counterproductive. Your loved one has been knocked about and even if you hold to the “if life give you lemons, make lemonade” philosophy, that takes work and grace.
There is help
As I mentioned above, I’ve walked this journey now for over 30 years and there are still things that change. Talking to an outsider, a trained professional can be helpful. I will help you navigate the ups and downs of what happened to you and how you can come out better for it.