Simply danLrene's Opinion

Work Your Dream

Through The Eyes Of The Chronically Ill or Disabled

This topic is one that some of us in my chronic illness group have been discussing…what does a chronically ill/disabled person do when people have misconceptions about their health or refuse to accept their condition? It is a real issue and many people who are chronically ill/disabled just feel helpless because they do not know what to do.

Many well-meaning loved ones can say and do things that make it harder for us because of their inability to accept that this is the shape we are in. They do not mean to hurt us or make it harder for us…but the truth is they do. I have friends that have cried tears of pain and frustration because of these things…I have cried tears of pain and frustration in the past too because it is such a helpless feeling when you can not make your loved ones understand how sick you really are.  I have been chronically ill longer than most people I know since I started when I was 32 and am now 63 and so I realize why our loved ones do this but it still can be hurtful.

When someone implies we are not as bad as we are and we should be up doing more…it hurts and makes us feel like we have to defend our health. When someone tells us that they have a relative/friend etc that has the same symptoms that we do and they are doing just fine…it hurts us and makes us feel like those we love think we are faking or lying. When someone makes comments that our health issues are not all that serious when they are, it hurts us and we feel helpless to make anyone understand what we are suffering.

When someone who can go up and down stairs, go to flea markets and anywhere they want and they take every symptom we have and claim it as their symptoms too, it diminishes what we are going through for if they were as sick or as disabled as us..they would be like we are and not able to do things. When someone does what I call the over the top Pollyanna and makes statements like on the days we do feel a little better that it is great and must mean we are getting well….it hurts us and puts expectations on us to be something we can not and are not capable of doing and that is miraculously heal ourselves to make everyone else feel better. If we could, the first person we would do it for is ourselves and we would have already done it.

I told someone just recently that what it takes is sitting your loved ones down and saying…”I love you and I know you love me but when you say these things you make it so much harder for me. I know you want me well but I am not well and I never will be well again and so it takes all my energy to fight and keep going and when you act like it is not that bad or that I should be doing better than I am, that creates in me this feeling that I must defend myself and must explain myself over and over and sometimes it makes me feel helpless”.  I have done this with loved ones and  yes they were upset at first but when they realized that I knew they meant well but that it was making it harder for me, they stopped doing it. Many have cried because for the first time they had to admit that I am this sick and in this much pain and suffering and it will never be any different.

And now, I will use a real life example…me. Today I had a pulmonary function test to check the status of my pulmonary fibrosis and the test results were not good. My capacity of the lungs is a little more than half of what it was two years ago and two years ago I already had moderate pulmonary disease.  They said the nebulizer medicine is not doing any significant good. I was really not shocked because of how I have been lately but the written word is a lot more impacting than what you think you know. And someone just told me to take a nap and then I would be better in this sunny Pollyanna voice. Can you imagine the impact of those words when you have just received word that you have Severe pulmonary disease and it has deteriorated a lot since the last test.  My response was “no, I will not be better after a nap but I will be a little more rested”.   And the words just flew on by as they made another Pollyanna remark about how wonderful that I would be more rested and how healing it was. So, I did not bother replying. I just changed the subject.

Words …even well-meaning ones can be hurtful and put expectations on the chronically ill/disabled and make our life so much harder. Tomorrow (when I am more rested…LOL)  I will sit this person down and try to explain to them what they are doing to me when they do that.  The person means well but it is for their comfort that they said what they said…not for mine. It made them feel better to talk like that for it helped them to deny the reality of the news I just got.

Guess I sort of became the spokes person on this topic for a small group of people who all are feeling the anguish and are trying to figure out how to tell loved ones that their denial of their illness or disability made their life so much harder and created stress for them. I do not know if all of you can understand what that is like because sometimes people take it as saying to not love us or support us and it is not. It is saying that denying we are sick or getting worse or disabled and we can no longer do what we used to be able to do hurts our hearts and takes away our fight because we feel helpless if those we love can not understand and accept how sick we are, then how can anyone else.

I guess the best way to say this is…when someone does not accept our health or disabilities it diminishes us. It makes us less than we are and we have already lost part of ourselves when we became ill and/or disabled and can no longer do what we used to. We fight so hard to prove to ourselves that we are still worthy and still have something to contribute to life but when those that love us say these type of things it can make us feel worthless and hopeless. And that is the last thing we need for the fight is so hard every minute of every day. We do not need more to fight.  I hope this all makes sense. I hope it helps those who are chronically ill/disabled and I hope it helps those that love those that are chronically ill or disabled.

June 27, 2012 - Posted by | Uncategorized | , , , , , , , ,

13 Comments »

  1. […] Through The Eyes Of The Chronically Ill or Disabled (workthedream.wordpress.com) […]

    Pingback by Update on Renovation « Work the Dream | July 27, 2012 | Reply

  2. Ty for this .,,,you took the time to explain this so well and I really appreciated it…Hugs to you

    Comment by Anonymous | July 8, 2012 | Reply

  3. A profound piece of writing here my friend… I think I could write a chapter or three on this but will attempt to keep my thoughts brief, but will tell you I find my mind racing and fingers trying to run to catch up with them… this is powerful, is heart wrenching… I do believe that those loved ones and friends are often in a sea of denial as they find themselves rendered speechless/feeling helpless and afraid of losing someone precious and so vital to their lives when hearing devastating news and grieving by inches as those with chronic illness and disabilities become weaker or unable to be what they once were to many in their activities of daily living… Denial is a strong front line defense to reality and rather than allow it to hurt/harm/diminish perhaps to recognize that when folks open their mouths they tend to step on their tongues in the world (ever been to a funeral)… folks just don’t know how to deal with the pain of seeing someone in pain, or less than what they want or hope for… At times they are at a loss for words, feel helpless, feel “out of control” to make it go away, make it better, to fix it, to pray it away, or snap their fingers to help… Not making excuses by any means and would that I could I would change that pulmonary test and all the chronic suffering that you endure on a daily basis as I bear witness from a distance and cry tears of sadness in knowing that your health is precarious and yet your kind and beautiful self is stronger than the eagle when she soars… You continue to empower others to take a stand and sometimes it is in “tough love” that those with chronic pain/illness/disability are best heard when the sugar coating stops and the facts are stated… I too hope you took a nap, allowed your beautiful body to rest and restore as much as it could after those tests and trips out yesterday… I pray you laughter, good days, strength, beauty to surround you, music to fill you, and moments of splendor in all that you endure… I thank you for the gift of you each breath that I take, I am grateful for YOU. Please call me out, when I speak and slip into the “doing of wanting it to all go away, yet know that it will not”… with love and great respect… I have NO respect for the ones who call themselves healers and have done harm, and the diseases that have attacked your beautiful body, yet will never have YOU…

    Comment by SHERRY E SHOWALTER | June 28, 2012 | Reply

    • oh sherry, your words brought tears to my eyes. Yes, I do truly believe that it is denial that makes people do that for they do not want to hear the truth and yet their grief and denial makes our fight harder. What a contradiction that is huh. I have seen people with loved ones who have been told they are drying from whatever…cancer, etc…and they refuse to accept that their loved one is dying and push them and push them to keep taking useless treatments and go through painful things because they can not bear to lose them and yet it is the one dying that is suffering and going through pain. I think we are not taught how to handle these things growing up. And it really is needed. Yes, I have had some doctors that just seem to have lost the vision of doing no harm and helping others and it has made my health worse. So, I just keep fighting. Hugs my friend.

      Comment by danLrene ©2011 | June 28, 2012 | Reply

      • This discussion is long past due… for family and regular people. Too often those of us who are healthier, just go about our routine business without being aware of the harm we put onto others. Someone such as yourself can teach us how to be caring and sympathetic and help without tearing down. Thank you. And as my Dad would say, “Blessings on you.” I had an Aunt who was paralyzed from polio, she said there are two kinds of people. Those who have experienced unmanageable and killing pain. And those who haven’t. And those who haven’t don’t have a clue. I feel very inadequate.

        Comment by Ann | June 28, 2012

  4. Education is always helpful. Thanks for the update.

    Comment by ansuyo | June 28, 2012 | Reply

  5. I really understand what you mean and no one has explained it better than you. You have hit the hammer on the head of how a chronically ill person feels about the comments others say about their condition. Their words cripple you more than the illness you have because of their unwillingness to accept your condition. As a result you can become more depressed and loose your fight to battle your illness. I know because I have severe uncontrolled diabetes with other complications. I don’t talk about it because people around me don’t fully understand how this has altered what I use to be able to do. I don’t want their pity and I certainly don’t want any negative energy that may interfere with my coping methods. I take comfort in how you have handled your situation and it gives me courage to follow your example.

    BE ENCOURAGED! BE BLESSED

    Comment by fgassette | June 27, 2012 | Reply

    • Thank you. I was trying so hard to explain what others have a hard time explaining. Sending prayers your way. HUGS

      Comment by danLrene ©2011 | June 27, 2012 | Reply

  6. Thank you for expressing your deepest feelings. I cannot say I understand, because of course I do not have the experience to understand. But I can say that I admire your courage and strength and am sincerely attempting to learn from you. Sending constant prayers to you and Son along with positive thoughts. Thank you also for your patience with me and others.

    Comment by Ann | June 27, 2012 | Reply

    • Thank you Ann. We have talked many times and while you may not understand totally what I am saying..you do understand. I value your friendship hon. 🙂

      Comment by danLrene ©2011 | June 27, 2012 | Reply

  7. Deb, thank you so much for this excellent post. I think my friends and family are finally beginning to understand at least some of this. People who do not know me, though, still think that if I’m having a relatively ‘good’ day, that I’m suddenly getting better, and should be able to do anything and everything – and that is so frustrating. It’s difficult sometimes to stay positive when one health issue eases off a bit, just to have another one take over with full force. When you have multiple, severe health issues, it’s an exhausting cycle that we go through every day of our lives. I was actually feeling pretty good when I got up today, although I haven’t had a decent night’s sleep for ages – managed to to a couple of minor things, and then exhaustion took over again … another day gone and I’m just too tired to even make dinner, even if my digestive system allowed me to eat it. As much as I wouldn’t wish this stuff on anyone, sometimes I think that unless a person goes through these conditions themselves, they just can’t comprehend the scope of our illnesses. Your posts do us all a great service, thank you so much for them. ~ Julie xox

    Comment by Julie Catherine | June 27, 2012 | Reply

    • Julie, your words are like balm to my heart and make me feel good to know that I am getting it right and that those chronically ill and disabled know what I am saying. Many hugs to you my friend and I am thankful for those on here who are going through the same journey. Hugs

      Comment by danLrene ©2011 | June 27, 2012 | Reply


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