I generally try to be positive despite the chaos living with rheumatoid arthritis (RA) and fibromyalgia brings to my life. But the fact is being chronically ill affects every part of my life. I barely recall a time when I wasn’t in pain or “sickly.” But I have to live my life no matter what it brings. But the reality is, I used to be able to hide it better than this.
I write about chronic illness and I give advice. I am an expert, at least that is what my most recent writing title says. And looking from the outside, you might see this Superwoman – she is a single mother with two jobs that keep going even she has nothing life inside her. Whether it is a chronic illness or life’s adversities, she has got this. You don’t know it is a facade. You don’t know the physical and emotional struggle that a superwoman feels daily.
Sometimes, I wonder if people look at me and think I struggle to walk because of my weight. Now granted, I have gained weight from all these years of life with RA and fibromyalgia from all the medications I take and from not being as active as I once was. But I am not that heavy, not enough for it to cause me problems moving. But I wonder what is perceived when I struggle to walk – or use my hands, or when my brain feels foggy, or when I feel generally sick. Do they think I am flaky or that I use drugs? Or that I am not smart?
I don’t know what others perceive. I just know what I feel inside. I generally try to be positive. But I get depressed, severely and often. This life isn’t easy. Illness takes a part of your soul you can never get back. You can hide behind a positive attitude for the world to see. But deep inside, you have fears, like how long you will live or what your illnesses will do next. You worry about your loved ones – your children –who will care for them if you become disabled or if your illnesses end your life.
It is hard to not listen to those negative thoughts because in your case, there is a possibility they could one day be all too real. I try hard to shut those negative voices but sometimes they get the better of me, especially when I am flaring, and it hurts to walk or when I can barely stay focused and awake because of the debilitating fatigue and brain fog.
Some days, it takes everything I have to do one household chore or stay focused to get work done at the office. And the people in my life – coworkers, friends, family, and even my children – are all oblivious to my inner struggle. I smile through the pain or I simply stay quiet and never vocalize my physical or emotional ordeal. I am sure many of them care but they don’t get it. Besides, there is nothing they can do, and I don’t want to place that burden on them.
These diseases – mostly RA, I think – have taken 10 years of my life and there are many more years to come of my being “sickly.” It is frustrating to NOT be in control of a very important aspect of your life. Nothing anyone says or does can change that. This is my reality – it is what it is, and there is nothing I can do about it either – other than fight for as I possibly can.
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