Wednesday, April 27, 2016

Defending Invisible Illness

"You don't have anything wrong with you. You have no issue walking." he said with dismissing disdain for what I had shared as I tried to empathize with him.
My word alone that I have a chronic illness wasn't enough for another person with chronic illness too.
Mine just happens to be invisible.

Sadly, I've become accustomed to others looking at me and automatically judging that I couldn't possibly have health problems due to my appearance and age. It is highly frustrating and bothersome at times but for the most part I've learned to shrug it off. After all, I do have an invisible illness. Others aren't able to visually see that my body isn't able to absorb nutrients fast enough to keep up with my Short Bowel Syndrome (SBS) and that I frequently experience chronic nausea and pain. Or that my activities are limited and I have to carefully plan out my activities around restroom access. On occasion others may witness my difficulty walking when I'm experiencing a severe flare up of my SBS when I'm forced to use the restroom every 5-10 minutes for hours and my body becomes so sore I can barely walk even if I wanted to as movement agitates my short bowel particularly during a flare up. Nor are others aware of my past medical treatment for colon cancer and the complications experienced or the future risk of additional cancers and complications.

It's not right for others to make assumptions and judgements about what a person may be
experiencing based solely on looking at that person. But it is understandable that others wouldn't be aware without asking. It's harder to understand though when the person judging another also has their own chronic illness. Those of with chronic illness tend to bond with others with chronic illness as we find understanding, comfort, and safety amongst each other. So we don't expect someone in a similar situation to judge us by looking at us in the same way as others without chronic illness frequently do.

There's no question that continued education and awareness is necessary outside of the chronic illness community. Occasionally we're reminded that continued education and awareness is also required within the chronic illness community.

When sharing with others we need to weigh our timing and our content. With many things in life, there's a right time and a wrong time for anything and this includes our education efforts. If it's the wrong time, our "audience" may not be as receptive as other times. Assessing the moment and the surrounding circumstances can help us gauge the right timing. Determining what and how we say will vary from situation to situation but is nonetheless important. We don't want to present ourselves as victims or as comparing ourselves to another's experiences.

We want to be understood in our own right while respecting and gaining common ground with others. During the in between time of progression, it's important for our own peace of mind and well-being to remember that others are not as open to understanding another's chronic illness and becoming angry and hurt in response is not helpful. Instead, let us try not to take this personally but rather offer the understanding that we are not receiving from these individuals. And in the meantime may we enjoy and encourage one another in our trials.

6 comments:

  1. This was a useful post and I think it's fairly easy to see in the other reviews, so this post is well written and useful.
    bod incubator manufacturer

    ReplyDelete
    Replies
    1. Thank you. I'm glad you found it useful

      Delete
  2. Good post! It's always a good reminder to not compare our struggles.

    ReplyDelete
    Replies
    1. Thank you. Definitely agree, it can be difficult dealing with others when comparing is all someone wants to do.

      Delete
  3. I agree with you. I wrote an article about this same topic for the Fibromyalgia Magazine. It saddens me to learn about all the experiences we have with physicians and loved ones. I'm determined to educate others and remove that stigma of "you don't look sick".

    Thank you for sharing at Chronic Friday Linkup! I pinned this to the linkup board at https://www.pinterest.com/beingfibromom/chronic-friday-linkup/

    ReplyDelete
    Replies
    1. Thank you so much! Thank you also for your efforts in educating and awareness! At the very least that stigma is annoying and at the very most it can be deadly.

      Delete