Today, I came across an article that other people with chronic pain in the blog world were raving about and so I took a peek and it's terrific! So You could have a peek too I included a few excerpts below :) hope it can help with a better understanding of chronic pain.
But You "LOOK" Good!
"Why Seeing Is Not Believing When Dealing With A Chronic Illness!"
Written By: The Invisible Disabilities Advocate, Sherri L. Connell, BA
What Is A Chronic Illness, Anyway?
A chronic illness is a disease or disorder that a person has to cope with on a continuous basis. Many people become so ill, they are unable to work and are forced to give up activities they have always enjoyed. Often their illness goes undiagnosed for years, leaving thousands of people frustrated, depressed and without answers to why their bodies will not cooperate with their desires.
But They "LOOK" Fine! How Can They Be Ill?
Many chronic illnesses such as: *Arthritis, Brain Injury, Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart Disorders, IBS, Lyme Disease, Lupus, Multiple Sclerosis, RSD and many, many more cannot be seen with the naked eye, but are nevertheless persistently keeping the person from enjoying life the way they once knew.
Unfortunately, their families and friends are not often supportive and understanding, because they do not see a broken bone or bleeding head to confirm the complaints. However, do not expect to see a disease that lives below the skin, because most illnesses are not obvious from the outside! Your friend or family member needs you to believe what they are saying is true, without judgment or question.
*This is only a very small sample of the hundreds of chronic illnesses that can be disabling; it is not intended to be a complete list of all debilitating disorders.
So, They Have "Good" & "Bad" Days, Right?
Actually, not everyone with a chronic illness has the same symptoms or degree of symptoms; yet, there are basically three stages in any chronic illness:
1) THE EARLY STAGE: This person may notice occasional symptoms or lack of energy. They start experiencing setbacks from activities that previously never took a thought. If diagnosed in this stage, which is rare, many can get help from their doctors and proper nutrition to cure or prevent further progression of the disease. This person has mostly "good" days with occasional "bad" days.
2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage):
This person may have frequent bouts of symptoms and is forced to make limitations for themselves in order to avoid extreme fatigue and relapse of illness. They reluctantly begin discovering that the simple things they used to enjoy, now must be done with care or sacrificed completely. In this stage, some can lower the frequency of relapse and progression of the disease with help from their doctors and proper nutrition. This person has both "good" and "bad" days, depending on activity and stress.
3) THE LATE STAGE (or the Progressive Stage): This person’s disease has progressed to the point where it does not remit. They live each and every day with symptoms that feel much like having the stomach flu, complete with extreme to unimaginable fatigue, muscle aches, weakness, nausea, cognitive difficulties, dizziness and/or pain.
When they push themselves to do what used to be easy, like dusting a piece of furniture, going to a relative’s house or doing a load of laundry, they pay a high price, because their symptoms worsen to an unbearable level for days and even months. In cases like Multiple Sclerosis, the treating drugs available are effective only for persons in stages 1 and 2. This person does not have "good" days, only "bad" days and "horrific" days.
Well, I Still Don't Understand!
At least once in your life, you have probably experienced having to stay home from work or school, because you were too sick to go; and, I have yet to meet someone who has never had a cold or the flu, tell me they are having the time of their lives and enjoying every minute of it! Or, you may have been hurt in an accident and were forced to give up activities you loved for weeks or even months. So, you know how stressful, depressing and frustrating being unable to do what you want to do can be!
Now, when I refer to being sick, I am not talking about feeling just a little “under the weather” or just not “up to” going to work that day. I am talking about being so sick you can barely sit up or talk, having a fever that makes every muscle ache and your bones feel like they are being crushed. Then, when you try to get up to go to the bathroom, your head pounds, your body feels like it weighs a ton and you become dizzy and nauseous.
Just imagine feeling that way every single day, week after week and year after year. True, some chronic illness sufferers have a few “good days” in between, but many do not have any at all! So, if you see them out and smiling, does that mean they are having a “good day?” Not necessarily! Many times they cannot wait for a “good day” to get out, because they do not have them; thus, they make the sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!
Do not expect a loved one to always be content with being sick day in and day out! After all, most people become very frustrated and impatient after just a few hours of being sick. Then, if it lasts a few days, they become panicked and angry about missing work, school or other activities. Next, they become depressed and act like a week out of their busy lives is the end of the world! Yet, they often treat their loved ones as if losing months and years out of their lives is no big deal! So, why would you expect your loved one to be happy with losing years of their lives, when you cannot stand to even lose a few days?
It is true, you will never fully comprehend what it is like to be chronically ill, with all of the loss and pain it poses. You will never know what it is like to feel horrible every day and you will never have a grasp at what it is like to watch your lifetime dreams come crashing down forever. So, stop using the excuse that you do not have understanding and start focusing on whether or not you have compassion!
In all, your loved one just wants you see their courage in enduring a life of feeling sick, achy and exhausted all of the time; and, you have the capacity to know you would not want to feel this way every day yourself! You know how horrible it is to be sick and forced to put your life on hold for a while, so why don’t you tell them how amazed you are at their strength and perseverance!
But, What If They "Give In" To The Illness?
When a young ice skater named, Nancy Karrigan was assaulted and suffered a leg injury, she faced the possibility of losing all of that which she had dreamed; the whole world cried with Nancy, because it could have meant the end of her skating career! Yet, when a person loses their job or is forced to give up their career due to illness, for some reason people often treat them like they are choosing to do so; and, they are often insensitive to the fact that the sufferer has lost all for which they have worked, planned and hoped for their future... just like Nancy.
Most people do not "give in" to illness; in fact, it is ingrained in our nature to fight to survive as hard and as long as humanly possibly. If you believe that your loved one is “giving in” to the illness, because they have given up their usual activities, this is just your perception of how they are handling their limitations.
When a person first experiences the effects of a chronic illness, they have a fantastic attitude about conquering it; they feel strong and invincible to its grip. Even if the disease progresses, they will continue to fight for their right to live the way they planned their lives to be; and, they will stay persistent in the battle until their bodies force them to make limitations.
Creating limitations for oneself is one of the hardest things a person can do. It goes against everything we are and everything we ever hoped to be. No one wants to be sick and no one ever chooses to give up those things in life that bring such joy. Yet, these limitations are mandatory in managing a chronic illness; so, respect their new boundaries by acknowledging their losses and supporting their need to say, "No."
It Seems like I Am Always Saying The Wrong Thing!
What can sometimes be even harder to bear than the illness itself, it is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit by bit, isolation consumes them when others refuse to affirm their pain. By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I don’t want to hear the truth" or "your losses don’t matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.
Resist the temptation to make a visual diagnosis by saying, "gee, you look like you’re feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realise they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.
In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I don’t believe you, because you look fine to me." Instead try, "I am so glad to see you," "wow, I can’t imagine what you go through, you are amazing!" "you look nice today," or "how can I pray for you?"
Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe. They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives that make our painful disabilities seem invisible to the naked eye.
I Never Know What To Say!
Tips On What Encourages & What Discourages Someone With A Chronic, Debilitating Illness!
Written By: The Invisible Disabilities Advocate, Sherri L. Connell, BA
It Seems Like I Can Never Get It Right!
Have you ever wanted to encourage someone with a chronic illness, but it seems like you never know what to say? And, when you finally think of something you know will make them smile, they just snap back at you with frustration?
This booklet will give you a sample of what comments are discouraging and what comments are encouraging and why people suffering from these illnesses feel that way.
I Still Do Not Understand Where They Are Coming From!
The intent of this booklet is to list some "do's" and "don'ts" and to explain how some well-meaning comments can be heart-wrenchingly painful to someone suffering from a chronic illness; you may not understand it completely, because you are not the one suffering from a debilitating disease. Yet, if you desire to encourage your loved one, rather than to discourage them - read on!
Couldn't I Just Try To "Cheer Them Up?"
They will smile when you tell them you are sorry for what they are going through, not when you tell them it is "not that bad" And, they will find strength when they can stop using their energy in attempt to gain your support, because they no longer have to fight your disbelief.
But, I Really Do Think My Suggestions Are Helpful!
The purpose of this booklet is to explain to you why some of the "answers" you have may be hurtful, destructive and actually make you seem as if you really do not care at all.
Your loved one does not need to feel as if they are fighting for your belief, respect and compassion in addition to fighting for their lives!
So, Why Do I React That Way?
There are four basic, natural emotions that occur in response to seeing a loved one become ill. All of these emotions stem from the first stage of tragedy, called denial. Although these reactions are normal, they are often followed by comments which make it apparent to the sufferer that you are not only in denial, but you are refusing to step along side to support them in what they have lost and what they are facing.
What "Discourages" A Chronically Ill Person?
Do Not Disagree With Them, Because You Can't See It:
"But, you don't look sick!" "But, you look like you feel good!" "But, you look good!" "But, you are here, so you must be doing well!" "But, you look fine to me!"
Often, someone will take the time to ask with all sincerity what it is really like to have a chronic illness and what the person is going through. This makes them feel loved and truly cared about until, after they explain their situation, you oppose what they are telling you.
When you say things like, "but, you don't look sick," you are really saying, "but, I don't care what you are telling me, because I can't see it, so I don't believe it." They are being honest with you, try to believe in them and be strong for them.
Do Not Minimize Their Situation:
"It is not that bad!" "It could be worse!" "You're lucky you don't have to work!"
Trying to act like having lifelong hopes, dreams and desires stolen away by a disease is "no big deal," is not only extremely hurtful, but ridiculous! Unless you are in their shoes, you have no right to tell someone "it is not that bad," when you are sitting there knowing you can get up the next day and reach for your goals.
Do Not Act Like You Can Relate:
"I know what you mean, I'm always tired, too." "Join the club." "Ya, I can't get anything done, either." "Hey, I would like to have a maid, too."
If you do not have a chronic illness, you do not know what it means to be sick all of the time! For some reason, people tend to think that if they do not show they can empathize, then they cannot show compassion. Yet, in this situation it backfires, because you cannot empathize!
Many sufferers’ resent comments like, "join the club," because the well person does not have the right for one minute to think they are in the same boat. If a friend is exhausted at the end of the day, I will give them all of the compassion they need; but, when they try to tell me they feel the same as I do, I have to draw the line.
What "Encourages" A Chronically Ill Person?
Acknowledge Their Situation:
"What you have been through is horrible!" "I can't believe what you must go through every day!"
Often times when a person is ill, the people around them refuse to move out of denial about the situation. Instead of listening, believing and showing compassion for what they have been through and what they are facing on a daily basis, they refuse the facts and minimize the severity of the disease.
Acknowledging your loved one's situation lets them know that you are there to accept the facts and move on to practical help. They will know that you are truly there for them to help them deal with their limitations and adjustments. But most of all, they will know that you love them even in their broken state and respect them for their perseverance!
Acknowledge Their Losses:
"I am so sorry you can't work anymore!" "It must be horrible, because you can no longer..." "I can't imagine what you have been through!"
Losing the ability to participate in activities, work and enjoy hobbies is incredibly devastating.
Acknowledging their losses will show them you have compassion for what they can no longer do or enjoy. Most of all, it shows that you believe that losing their ability to do something they once had is something that is unimaginably heart-wrenching for them and not in any way something they have wilfully chosen for themselves!
Show Them You Are Listening:
"Honestly, how are you doing?" "How can I pray for you?" "So, what is really going on?"
If your loved one tells you they do not have "good" days and are instead very ill every single day, stop asking them how they are feeling if all you want to hear is that they are feeling good! - Doing this only makes them realize you are not listening, have absolutely no idea what they are going through and will not love them until they get better or lie.
Instead, why not try, "how are you doing?" This will spark an answer that addresses how they are dealing with their challenges, struggles and emotional state, which, unlike how they are "feeling" can fluctuate.
Being A Comfort In The Face Of A Tragedy
In all, you honestly mean well and truly want to be an encouragement and comfort to others - Yes, accepting what is happening to your loved one means having to deal with all of its pain, mourning and changes, but do not
sell yourself short! After all, if they are forced to live with it, you can certainly choose to live next to it!
"Truly Love Me, By First Believing In Me!"
I Never Know What To Do!
Tips On How To Help Someone With A Chronic, Debilitating Illness!
Written By: The Invisible Disabilities Advocate, Sherri L. Connell, BA
The Balancing Act!
Many people think a person with a chronic illness has a lot of time on their hands, when nothing could be further from the truth. In fact, most chronic illness sufferers do not get the rest they need, because they are so busy spending all day trying to do the things that a "well" person can do in one hour.
Dreaded Limitations!
In order for a chronic illness sufferer to visit with a friend or attend a social gathering, even more daily sacrifices have to be made in order to prepare for the event - They do this by avoiding any other outings or projects around the house for several days, because the energy it takes to sit, smile and talk is incredible! And, by exerting themselves, they will then suffer the consequences for several days, weeks or months and end up even more behind on their daily duties.
So, should you avoid asking them to spend time with you? Absolutely not! Spending time with friends and family who care, gives incredible strength and will to keep fighting the battle! Go ahead and invite them, but allow them to say, "no" if they have to, realizing they would if they could. By showing you want to spend time with them, you will make them feel loved and important.
So, Where Do I Start?
First, it is difficult to recognize there is a need, by simply looking at someone with a chronic illness; often they appear physically able to accomplish any task set before them...
Unfortunately, most people make the mistake of overlooking what their friend or family member is telling them, because they cannot see the disability. Therefore, the first thing you must do, is to learn to listen to their needs, without discounting them with your eyes.
So, What Can I Do?
• As previously mentioned, a person with a chronic illness will tell you how you can help, if you simply listen. Often, they need rides to doctor appointments or would benefit greatly if you could run an errand for them.
• They know you are busy, overextended and do not have a lot of leisure time; they do not want to add to your pressures. The secret to getting them to accept your much needed help is to do something that is convenient for you.
You can do this by - Another way to approach them is to - Or try -
And, What Else Can I Do?
Something most people don't think about is - When you go to visit your friend
Another way to ease their housekeeping situation is to - you would not even have to break a sweat!
Because getting out is often too exerting, you can
In all, remember to listen, believe what you hear, allow them to say, "no" and offer specific help that is convenient for you. Do not worry about making time for hours of strenuous help; what is simple for you could save days of excruciating work for them!
"Just A Little Bit Of Your Time Can Make A Very Big Difference!"
When a friend hurts, we gather around
her. When she has surgery, we line up
outside her door with meals. We send
flowers, cards, and gifts. We provide
childcare and, of course, prayers.
Gradually she heals and is able to return to her every day
life.
When a friend is diagnosed with a chronic illness the natural
cycle of healing doesn't take place. What do we say? Do we
encourage her to remain hopeful? Chronic illness is
permanent and often degenerative, requiring her to change
nearly everything about her life. The emotions that
accompany these changes in her life are often more difficult
to cope with than the pain itself.
What to Say What Not to Say How to Help
What to Say
Be honest. Say “I wish I knew the right thing to say, but I
care and I am here if you need me.”
Ask her if she’d like you to pray for her and ask what she
wants you to pray about. Respect her request. Don’t pray for
healing if she wants prayer for new medications.
Remind him that coping with life’s difficulties is a process
and that the length of time is different for everyone. Tell
him that he is coping well. Just listen. Let her share her
thoughts and feelings with you and don’t say, “I understand,”
if you haven’t been there yourself.
Respect where he is with his faith. If you see him struggling,
be sensitive to it and don’t tell him to snap out if it, that God
is still good. Pray for him silently and be patient.
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Treat her as though she is still a whole person, despite her
limitations. She wants to feel capable and in control. Let her
make the plans.
Become somewhat educated on his illness. Ask him if he’d
mind answering some of your questions. Remember, just
because you’ve read a book doesn’t mean that you know how
he is feeling physically or emotionally.
Don’t assume that she copes with things the same way you
do. She may gain strength by alone time while being alone
depresses you. Let her cope in her own way and don’t tell her
she is coping in the “wrong” way.
Let him know you are thinking about him. A card or a phone
call can make the difference.
What Not to Say
Avoid giving “God balm.” If you say “God will heal you” or “all
things work together...” she will believe you don’t really
understand and avoid sharing her feelings with you in the
future.
Don’t feel compelled to share every “cure” you’ve heard of
for his illness. He’s constantly bombarded with cures and he
needs you to be his refuge from that.
Be aware of the fact that illness is not just a matter of
attitude. Don’t say, “When are you going to get rid of that
cane?” or “Did you know illness is caused by stress?”
Respect her limitations and be sensitive to them. Don’t say,
“A little walk might do you some good” or “No pain, no gain!”
Only she knows her limits and they will likely change from
day to day depending on many factors. What she could do
yesterday may not be possible today. Don’t question that.
How to Help
Offer specific ways that you can assist your friend. Say “I
am going to the drug store. Can I pick something up for you?”
Look around her home and see where your friend might need
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some help. Does the shower need scrubbed? The leaves
raked? The carpet shampooed. Offer to take care of these
things.
Volunteer to pick up some groceries rather than do the
cooking. Many times people with illnesses have restrictive
diets, so they may prefer some fresh fruits and vegetables
than a casserole. Ask what meals he is eating and then
freeze some of these for him to have on hand.
Accompany her to places where she may need some
assistance. Get your haircut at the same time, or have the oil
changed in her car while you are eating lunch. Bring an
uplifting personal little gift when you come to visit: some
fresh cut roses, a new book, a funny movie, some cookies for
the children, a blanket, potpourri to make the house smell
good.
Remember that one’s spouse and children have needs too and
these often concern your friend. Take the children out for
awhile so s/he can get some rest. Plan something special for
the children and before you drop them off at the house, pick
up a small “something” that will make their parent smile like
some fresh flowers.
Ask your friend what her concerns are and how you can
address them. One woman who was ill said that she would like
for a friend to make sure her children made it to Sunday
School and church when she couldn’t go.
Ask the person’s spouse how you can help the family. One
spouse was appreciative of gift certificates to the local fast
food restaurants so that the children could occasionally have
a quick meal and his wife didn’t have to worry about making
dinner.
The rest of this booklet which includes other sections such as:
- Unmasking Society's Depiction of People with Disabilities
- Understanding the Differences and Similarities Between Having Visible and Invisible Disabilities.
- The Invisible Disabilities Advocate
- Pick Your Battles...Chronic pain causes so many losses in our life; it is easy to become overwhelmed
- People in Pain - a search for support
- Conquering Pain, New discoveries and treatments offer hope
Is free on a pdf file linked below:
http://aware-rsd.tripod.com/sitebuildercontent/sitebuilderfiles/but20you20look20good.pdf
~ElysiaB
