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Wednesday, January 16, 2013

When Telling Someone They Look Great Becomes an Insult!

When Telling Someone They Look Great Becomes an Insult!
By: Scarlett Hill

Link to Article:

"If I asked you what Diabetes looks like, could you tell me? How about heart disease or Epilepsy? If I showed you a picture of four individuals, three of them diagnosed which one of the illnesses listed and one person who has no medical issues, do you think you would be able to tell me which one was not ill? I think not! Diseases do not all have a 'look' to them. Do not be fooled. Just because you cannot see it does not mean it is not very real and in some cases debilitating, serious and possibly life threatening. There are too many invisible illnesses to list, however each holds true to the fact that you cannot look at a person and know they have it or how they suffer.

Many people with invisible illnesses suffer in silence and there are multiple reasons for this. Millions of people who suffer from these conditions take on the added stress from friends, co-workers and even family members implying that because they don't have the appearance of being sick they must be exaggerating their condition. This actually has the potential of creating more health problems for the individual such as depression, alienation and complications caused by stress. When a person is ill, in pain or trying to cope with the acceptance of an illness the first people they turn to are their family and friends but sometimes the outcome is not a positive one when they cannot see the struggle. At this point there becomes an overwhelming sense of feeling alone and it becomes extremely difficult to deal with such debilitating symptoms. At this point you should seek out local support groups or online groups to connect with others who understand your struggle.

'But you don't look sick'

When family and friends don't know what to say, they often say the wrong thing! They think they are paying a compliment by saying things like 'but you don't look sick' or 'you look great you must be feeling better.' However, when these things are said to someone who lives their life in total agony, defeated emotionally by pain, in reality they are verbally stabbing the person right in the gut. While these words seem harmless, they can cut like a sword to someone living with an invisible illness. If you have a loved one who you may have said these types of comments to, you may want to re-evaluate what they are experiencing and how you may better approach it next time. Seek out care taker support groups or online forums run by individuals who have the same type of illness and research it. Ask questions and get an understanding of their quality of life. This may help you to better grasp what your loved one is feeling and open up the lines of communication between you.

Invisible, But Destructive: Gastroparesis

Think about the last time you had the flu. Really think about the details. How did it make you feel? Really visualize it, relive it mentally for a moment. I am sure there are images of stomach pain, vomiting, diarrhea; body aches and a few words along the lines of "oh please, make it stop" coming to mind right now. As your head hung over the side of the porcelain princess (aka the toilet) I would be willing to bet that you were counting down the minutes of this traumatic event, praying that it would promptly end and that you could go back to life as you knew it 24 hours prior; healthy, happy, pain and vomit free with the ability and desire to eat and drink at free will!

Now I want you to imagine life living with that flu permanently. Every day of your life bringing those symptoms you fear. Not knowing if today you will vomit upon waking, be able to hold down liquids, be able to eat, drive, grocery shop or if today will land you in the hospital. You may not be aware but this is the harsh reality for about 5% of the population. It is caused from a condition called Gastroparesis (GP). Gastroparesis means "paralyzed stomach" and is an extremely painful, awful, debilitating, misunderstood condition. It is very real. It is also very invisible. You cannot simply look at someone know they have it. There is no cure. Doctors are limited in their knowledge about it. There are only a few treatment options and they do not provide much relief at this point. There are no medications. There is no escape from the symptoms and in some cases there is no escaping the possibility of death. Many things in life are a choice. Eating is not one of them. When an invisible illness effects a person's eating habits, it affects their entire life.

Now imagine if you had this invisible illness and after a night of stabbing, gut wrenching pain, vomiting for hours, unable to eat yet you are starving and having the desperate wish for a cure and someone looked at you and said 'but you don't look sick.' It is great you don't look the way you feel, but that is such an insulting comment when all you desire is for someone, anyone to understand and be supportive. We need to raise awareness in all of our communities about the different invisible illnesses and become a greater support system for our loved ones. If you or your loved one suffers from one of the other many invisible illnesses, you may visit the Invisible Disability Association for information, encouragement, awareness and more."

At this point in time, Gastroparesis remains to be one of the most severe, debilitating and in some cases life threatening motility disorder. There is no reliable research, safe medications or adequate treatment options. Please visit to learn more.

If you are a caretaker of someone with Gastroparesis you can join this group that will help you.

Loved Ones with a Gastroparesis Warrior: This is a safe place where you can ask questions, vent and become educated on the condition.

You can also join our other group that will help you with questions as well as advice and support. Stronger than Gastroparesis (GP Warriors):

1 comment:

Unknown said...

I LOVE IT! This is my current discontent with my world. I am leaving the hospital tomorrow after 12 days, and on my worst days, was told I looked good- and even that I had a 'glow' (must've been the hospital lights because my dark circles and pale skin do not look good to me! LOL) THANKS SO MUCH for writing about this. Nothing anyone says bothers me more than this and so I take another opportunity to educate, and I know they mean well, but you are right, it is like being stabbed or told to 'JUST EAT'. God bless you for all you are doing for 5 million of us- one by one we are going to spread awareness and education! I am now the contact person for my little town here in Montana for when/if anyone presents with GP and has questions or just wants to know someone. I have personally never met anyone with GP- just online. But it feels good to know I might help in the future as I have been helped. Thanks again!