Simply danLrene's Opinion

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Things Not To Say To The Chronically Ill

This was on a site of what not to say to someone brain injured, but I can tell you that it is also things not to say to those chronically ill. I hear from folks all the time asking me to write on this topic and I plan on writing a blog later on it, after I get over this surgery and travel to the hospitals but for now this is a great list.
Here are a few things you might find yourself saying that are probably not helpful:

1. You seem fine to me.

Your loved one may look normal, but shrugging off the invisible signs of illness is diminishing to a person that is chronically ill. It does not make them feel better. Many can not see the illness in others because they are called “invisible illnesses” for a reason.  Also in this category is telling people they look wonderful when the reality is…no they do not. We are smart people and can look in a mirror and see what we look like. It diminishes us and makes us feel like a person is saying we are faking. And just because we choose to smile and be happy, or choose to get up one day and push ourselves hard to do something knowing full well that we will crash afterwards…does not mean we are cured or well. There is no cure for auto immune disorders and for many chronic illnesses. That is why they are called “chronic”  (which means long- term).

2. Maybe you’re just not trying hard enough (you’re lazy).

Depression, fatigue, and chronic pain are common with chronic illness. Side effects of some prescription drugs can also look like we are not trying but believe me when I say that people who are truly chronically ill get up every day and work much harder at surviving than the normal person works at their job. We exhaust ourselves trying to live and get through each day.   I remember my son when he got down with his back for weeks and after it was better, he looked at me and said “oh Mom, I am so sorry for what you endure. When I was laying there I thought how do you do it with such grace and smiles”  but it took him being down and could not do for himself to understand.

3. You’re such a grump!

People who live with chronic pain, chronic sickness and other symptoms are not always happy. Some of us are able to joke a little more but we are human. When you come home from work all irritated and want to sound off, stop a second and take a look and realize that is all we are doing too..is sounding off from the frustration of no one listening to us, no one paying attention, of being so sick we can not get up and the list goes on. We are really not that much different. We just do it in different ways.

4. How many times do I have to tell you?

Mental fog comes with Chronic illness. We may forget easily. May repeat something we had told you earlier and then we may have days where our brains just click into place and we run like a computer but reminding us of our fog only brings it to the forefront again and becomes a vivid reminder of what the diseases have done to us. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and clear just by facial expression. Those eye rolls speak loud and clear to us and make us back away from letting you in our world.

5. Do you have any idea how much I do for you?

Your loved one probably knows how much you do, and already feels incredibly guilty about it. And so when someone reminds us, it makes it even worse and makes us wall ourselves in even more. We are not sick on purpose. We are not lazy and truly can not do the things we need to do for ourselves. Trust me, if I could do it, as would many, we would never ask anyone. I am blessed by my son who takes care of me but he also knows I do not want to interfere in his life and his being with his friends.

6. Your problem is all the medications you take.

Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual dysfunction, or weight gain — just to name a few.  if you blame everything on the effects of drugs, two things could happen. One, you might be encouraging your loved one to stop taking an important drug prematurely. Two, you might be overlooking a genuine sign of their illness.  And I can tell you, many chronically ill people have stopped taking meds because of that one statement above. We take meds because it takes those meds to help us live a little better and believe me when I say a “little”, I mean a little. As one friend recently said on some toxic treatment drugs she is taking now….they give me about 4-6 hours in a day that are fairly good. Can you imagine what that is like?  Can you imagine knowing that those pills or IV’s hold medicine that only partially helps us live our lives?

7. Let me do that for you.

Independence and control are two of the most important things lost after chronic illness hits.. There is a fine line between doing everything for your loved one, be it a parent or a child, and doing what they really can not do. If you do everything, you make us lose the desire to try. If you do nothing, you make us want to give up.  Some chronically ill will want someone to do it all for them….until it is something they really want to do and then they will get mad because you made the arrangements already.  When your loved one is still capable of being up and doing some things….let them do it. It gives a feeling of accomplishment and takes away that worthless feeling that can come when we can not do anything. Son helps me, but he does not do everything. I make myself get up, sit on the stool in the kitchen and put dishes in the dishwasher because it gives me a feeling of accomplishment.

8. Try to think positively.

If you tell someone to stop thinking about a certain negative thought, that thought will just be pushed further towards the front of the mind (literally, to the prefrontal cortex).  A positive attitude is a choice and we have to choose to do it. No one can do it for us. You can not let your loved ones pull you down into the whining and misery part of chronic illness. Continue to live your life with joy and happiness and after a while, they will decide they want to be a part of it, or not. But it is their choice.

9. You’re lucky to be alive.

This sounds like positive thinking, looking on the bright side of things. But be careful. A person with a chronic illness is known to have  to have suicidal thoughts. Some chronically ill people may not feel very lucky to be alive and may be holding on to what they used to do instead of facing what they can no longer do and working to make their new life happier . Instead of calling it “luck,” talk about how strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome. And encourage them to do for themselves as much as possible. That old saying “use it or lose it” is true in both mental and physical parts of us.  And

 

December 18, 2012 - Posted by | Uncategorized |

3 Comments »

  1. Reblogged this on renplus and commented:
    I think the advice in this blog also applies to anyone with a chronic, debilitating illness. I have Rheumatoid Arthritis, which by itself may not be as life-threatening as other illnesses, but I found that these words certainly apply — and I have heard every one of them delivered by some well-meaning soul at some point.

    Comment by renplus | December 19, 2012 | Reply

  2. I get the first one all the time about my husband who is NOT fine. It makes me so mad.

    Comment by jmgoyder | December 18, 2012 | Reply

  3. The “you seem fine to me” or the “You don’t look like your hurting that bad” grrr my fibro is not near what you endure every minute of every day but hearing these words make me want to just put them in my shoes for an hour. I sincerely hope you are feeling ok after the trip and procedures this week. Wishing both of you a very MERRY CHRISTMAS!!!

    Comment by lenwilliamscarver | December 18, 2012 | Reply


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