The Complexities of Living with Invisible Illness

The Complexities of Living with Invisible Illness

Shireen Hand Endometriosis My Life With You

What does a chronically ill person look like? Would you look at these photos of me, all made up, hair done and dressed, and think that I’m ill? Probably not.

comparison, close upI suffer with endometriosis, fibromyalgia, osteopenia and a range of other health and mental health issues. You might presume that because I can get myself dressed and put makeup on, that I am fit and able-bodied. But I’m not. I am in pain, fatigued and on a range of medication in both photos. You cannot see my illnesses though, because they are invisible.

Some days, I feel OK. I wouldn’t go as far as saying I’m fine, but I have the energy to get ready and leave the house. It doesn’t happen every day. Sometimes, it doesn’t even happen every week. But, occasionally, I feel OK. I love nothing more than getting to use all my makeup that sits gathering dust in between these times. Love putting on one of the pretty dresses I’ve accumulated, but rarely have the occasion to wear. Walking out of the front door. Getting to see the real world. Seeing people. I love these times. Even though they are energy-consuming and I always have this nagging knowledge at the back of my mind that my illness will make me suffer for the next few days as payback; these times take me back to how my life should be.

comparison, full bodyI feel incredibly jealous of others who are able to live their lives as I want to live mine. Sometimes, I feel anger toward others when they don’t live their lives to their full potential. I have learned to appreciate the path my illness has led me and in some ways I have discovered gratitude for it. But that’s only because I don’t have a choice. I’ve had to start appreciating the little things that others might take for granted. Taking a shower, getting out of bed, making dinner; these are all massive tasks for someone who is chronically ill. But you have to look at them as positives when you have achieved them.

On certain days, usually after I’ve enjoyed an hour or two out of the house (but not always, because chronic illness has no rhyme or reason), I struggle with even the smallest of tasks. Getting out of bed, making myself a drink, stringing a sentence together. Chronic illness isn’t just about pain. It affects all of our bodily functions. You cannot think clearly and movement is restricted, often to the point where we cannot move independently. It is both physically and mentally exhausting.

Even on the OK days, I take a range of medication to get me to the point where normal people start their days. There is never a time I am not medicated and feeling good. It just doesn’t happen.

Chronic illness isn’t straightforward and that it is invisible makes it harder for others to understand. It must be hard to see someone looking a mess, tears running down her face, popping pills left, right and center, barely able to walk with the pain on one day, and then the next, be dressed and out of the house like nothing is wrong. But, let me assure you, it’s all behind a facade. A face we plaster on to make us fit in with everyone around us. Something that makes us feel a little bit normal, even if it isn’t our own normal.

We’re not attention-seeking, and we are not hypochondriacs. We are simply trying to live with invisible illness in any which way our bodies will let us.

You can follow more of my journey over at www.emlwy.com.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

2 comments

  1. Lynn Hand says:

    Once again we have the same old thing because people can’t see or hear your pain then it isn’t happening. It’s heartbreaking as your mama to see this and really think all girls/ ladies should wear a large body sling and gather together to say just because you can’t see we are ill doesn’t mean we are ok.

  2. Wendy O’Neil says:

    Wow, reading this is like reading a page out of my own journal. It’s comforting to know that you are not alone, even though you wouldn’t wish this illness on anyone. It’s so hard for my husband and parents to understand what I go through and this is an exact description of how I feel from day to day. Thank you for sharing your story with us.

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