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Isolated : The Lonely Side Of An Invisible Illness

February 23, 2018

 

I always start my story with " I went to sleep as LeaAnn, and woke up a total stranger.

On September 2014 Labor labor day, I suffered a bleeding stroke and brain anyurism which led to brain surgery to relieve the pressure, due to an blood infection I caught in my mechanical heart valves after some routine dental surgery. My doctors told my family that if I survived, I would never be the same. After 3 months of learning everything all over again, how to walk and talk, how to chew, swallow, walk and talk, my doctors were right about one thing. I will never be the same. 

 

How do you explain " The invisible injury" to someone who has no idea of our daily struggles? Feelings of isolation? Our losses? Deep physical and mental pain? Feeling awful on the inside while looking fine on the outside. The feeling of being on the inside while looking out, the isolating feeling of being in a room full of family and friends, and feeling utterly alone. The isolation and lonliness of being in debilitating pain that no one can see.

"I find socializing so hard
And when I force myself I rarely enjoy it"

"I feel lonely all the time I have a horrible traumatic brain injury from a car accident and the flashbacks are horrific. 

 

PTSTD is one of the loneliest places. To everyone on the outside it looks like we are spoiled brats throwing a temper tantrum and in need of a pretty white jacket with gold buttons. What no one else can see, is the nightmarish flashbacks, night terrors, flashbacks during the day. Invisible are the triggers that can set us off in an instant. If others could experience reliviving abuse, trauma, violence or your accident over and over again, at night as we sleep or in bright daylight.

"I feel lonely all the time I hate it so much."

"It seems that people in my circle just don't understand what I'm going through.  

 

Lonliness does not depend on how many friends or relationships you have. I often hear " But you have a family, you can't be lonely" one of the lonliness feeling is feeling as if your family doesn't truly see you, or understand what your going through. Feeling even lonlier when you are with a loved one or a friend. Over the summer I spent a weekend with my family who I hadn't seen since my stroke, as I sat outside with my brothers, my neices, nephews and sister in law.. I felt as if I truly was on the outside, watching them laugh and joke, I felt completely detached from them. How about you? Has anyone else experienced the lonliness of feeling like you don't belong anymore?

" I feel lonely and depressed most of the time."

Depression in any invisible illness, Multiple sclerosis, fibromyalgia, chronic pain, brain injury can alienate you from others who cannot see you struggling to get out of bed when your feet legs feel as if they were wrapped in barbed wire invisible to everyone around you. On the outside, it looks as if we are lazy, making excuses and my personal favorite.. "Looking for attention" the truth is we would much rather be healthy and getting positive attention from our family instead of the negativity and accusations that follows us on a daily basis. 

 

" Because not one of those who love me can possibly understand so I have to to keep acting like I'm ok when I am really just hanging on."

I recently wrote a blog " you only know it if you live it" The first time I heard that lonliness and isolation about took my breathe away. No one can ever know unless they go through it also, and although we would never want to see our families or friends suffer, the lonely ache begs for someone to feel the fatigue from depression, physical and mental ilness, injuries or illnesses. A very good friend of mine is losing her fight with multiple sclerosis, she is stuck in a wheelchair and is consumed with ridiculous amounts of pain. But it's not her physical pain that she feels is the worse. Its not being able to go out with her friends, not being able to drive.. All these little things that close the door on your social life that can leave you feeling left out and forgotten.

Social rejection and loss cause our brains as much pain as a serious injury. Some studies have shown that pain killing drugs can reduce that in a similar manner to the pain suffered from an injury.  

 

I recently did a poll in my Facebook group "Beautifully broken" asking How many had other ailments they suffered from aside from their brain injury. The response was overwhelming. Out of the 49 survivors that answered, not one said they didn't suffer from any other illness or disease. Fibromyalgia, cancer, neuropathy, heart conditions, PTSD and diabetes were among the many illnesses that were mentioned. I myself suffer from diabetes, PSTD, Rhuematic fever, neuropathy and fibromyalgia are just a few of the ailments that keep me from being able to do the things I used to. My daughter once saud to me " nobody wants to be around a sick person". That left me feeling abandoned due to my illnesses and injuries. As I'm sure many of you experience. 

 

Another side of the isolating invisible illness is wanting to get out and have a social life, for me, this is the loneliest part.. But at the same time not wanting to be in crowd's, bright lights noise make me physically ill, and in general, feeling out of place and awkward. I get dressed get ready.. And then anxiety kicks in and I cancel.. Which makes me feel guilty and relieved at the same time. And if your anything like me and over think every little thing so much that now I have beaten myself up to the point of no return.

Lonely is knowing that as you sit home alone.. Or in a crowd feeling out if place and isolated.. Nobody cares.


There are a few things that help me when I'm feeling isolated and alone that may help you. Remember, Not everyone is the same. What works for me, may not work for you and vica versa. Getting outside for Some fresh air, if you can help me a little. Work in your garden for 15 minutes if that's all you can do, take a little walk listen to the sounds of nature. Birds and squirrels singing for you always makes me feel a little better! If you can a few minutes of yoga or some gentle stretching really helps my self esteem.. Especially when I start seeing results! Just sitting on your bed doing bicep curls makes you feel a little better about yourself.  



In conclusion, for those of you who know me, probably know my last lonliness buster.. And that is writing about it. Get all those feelings of abandonment, self esteem, isolation, anything you might be feeling out on paper. Doesnt matter if your like me and struggle with penmanship or spelling.. This is just for you, time to get it all out. I want to thank my invisible illness warriors group and Beautifully broken for their honest input and help in the writing of this blog. Thank you for reading.

 

You are not alone 

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