I also wanted to post here that in the fact section I have some good stuff posted like "but you don't look sick" the ten commandments of dealing with us basically, good for non understanding family/friends.
and collectivly we've gotten lots of good info there that might be good to let some of these people read about what you're going thru.
alot of it mentions how many of us don't actually look sick but if you basically could step into our shoes, you'd likely flip!
Something you may want to print for family and friends...
"But You Don't LOOK Sick..."
10 Commandments for interacting with the chronically ill
In the realm of chronic illness, one of our more challenging tasks can be gaining support from others. As if finding a knowledgeable and caring doctor wasn't difficult enough, finding caring and supportive friends to surround ourselves with can be even more difficult.
Most people are simply not capable of understanding, unless they have the misfortune of a chronic illness of their own.
How many of us have heard something along the lines of “But you don't LOOK sick...?” It makes one wonder how a sick person is “supposed” to look.
If one were to hobble around on crutches, would their illness suddenly become more believable?
Our society understands the visible, physical manifestations of illness, such as a broken bone in a cast or hair loss from chemotherapy.
What many fail to grasp is the subtle, invisible manifestations of chronic illness.
Symptoms such as pain, severe fatigue, and cognitive impairments are not easily visible to the average observer, which means that sufferers of chronic illness often look “just fine”.
Our society is all about instant results - the mindset that we can just pop a magic pill and all our troubles will go away.
When sufferers of a chronic illness do not quickly “get better”, we are often treated as if it were somehow our own fault.
We may even be told that we are “hypochondriacs” or that “it's all in our head”.
Remember when you had the flu? You were exhausted, achy all over, and could hardly get out of bed. But, fortunately, the illness passed and you were back to your old self and usual activities.
Now, imagine if you had never recovered from that flu. Every day, you wake up achingly sore and as tired as if you had not slept at all. Imagine trying to go through your usual activities while feeling this way.
Not only do work, school, and regular tasks of daily living become near-impossible, but so do the smaller day-to-day things that so many take for granted, such as simply washing your hair or paying the bills.
It is stressful, it is exhausting, it is depressing... and yet the chronically-ill person continues on in the face of it all.
For those of you who may have, at some point, been the perpetrator of an otherwise well-intentioned comment, please understand that our illness is just as real as that of an amputee or other “visible” illness.
To help aid those of you who wonder how to interact with a chronically ill person, allow me to present the Ten Commandments.
1. Thou Shalt Not Imply That We Are Not Truly Ill.
You will not convince us otherwise with remarks such as, “You LOOK good,” or “But you don't LOOK sick.” Even if you meant them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.
2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.
People with chronic illnesses are persistent, if nothing else. We hang on, day after day.
We see countless doctors, take numerous medications, do endless research, and continue hoping that the answer is just around the next corner.
So please do not insult us by delivering diagnoses, remedies, or comments such as, “Why don't you just...” or “Have you tried...” or “You should....”
If it truly were that simple, I assure you that we would have done it already. We are sick, not stupid.
3. Thou Shalt Not Imply That We Brought This On Ourselves.
We did not choose to become ill, just as we do not choose to stay ill. Simply having a positive attitude is not going to solve our problem.
One would never imply that a quadriplegic chose such a trial for themselves, or could get better “if they really wanted to”. Please afford chronically ill patients the same respect.
4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.
If people with chronic illnesses push ourselves too hard, we can suffer serious consequences. Most of us have developed coping mechanisms to help us survive, and it is cruel to expect us to do more than we are able.
One chronically-ill woman I know was actually told, “I wish I could have the luxury of sleeping all day.”
Believe me, we would much rather be out working, playing, spending time with loved ones, participating in normal activities.
“Sleeping all day” is not a luxury for us – it is a critical necessity, one that we must take in order to protect whatever remaining health we have.
Perhaps it may help to think of it in terms of being one of the medications we need to take.
If you wouldn't think of denying a diabetic their insulin, then don't think of denying the sufferer of a chronic illness their critical need, whether it is a mid-day nap, avoidance of certain foods or environmental factors, or something else.
5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.
Unless you have a chronic illness of your own, you cannot possibly understand just how much suffering is happening.
Of course you want to be compassionate and want to relate to people. But when you try to do this by telling a chronically-ill person that you are always tired too, it tends to make the person feel that you are minimizing their suffering.
Try saying something more along the lines of, “This must be so hard for you,” or “I can't imagine what you're going through.” It really does make a difference to us.
6. Thou Shalt Be Mindful Of Other Family Members.
Chronic illness doesn't just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members.
The balance of family dynamics will most likely change, especially if it is a parent who is ill.
The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member.
Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.
Individual family members adjust in different ways and at different paces.
All members might benefit from counseling to help handle the stress involved, and each family member also needs to have time to pursue their own individual interests.
External support from friends, neighbors, extended family, religious institutions, and support groups may help ease some of the burden.
7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes With Us.
For the chronically ill, any day that we can accomplish a task, no matter how small, is a “good” day!
Our lives are often measured in terms of doctor's visits and lab work, and our “success” measured by a rise in Natural Killer cell counts in our blood, or actually completing an entire load of laundry in just one day.
Please do not look at us as if we are joking when we share these celebratory moments with you. Celebrate with us, be happy with us, and do not kill the moment by announcing that you just completed the Ironman Triathlon in record time.
8. Thou Shalt Offer Thy Specific Help.
There are so many ways to help -- the most difficult part is usually getting a chronically-ill person to accept that help. They do not want to feel like a “burden”.
If you offer a vague, “Call me if I can help,” the call will probably never come.
But if you are sincere, consider extending offers of specific help, such as a ride to a doctor's appointment, or picking up a few groceries or the dry cleaning.
These activities can be done in a way that does not add any extra burden to your own schedule. If you have to go to the grocery store for your own family, it really isn't much extra work to grab an additional loaf of bread and jug of milk.
If you have to swing by the post office, getting an extra roll of stamps or mailing an additional package isn't much extra effort for you – but it can save a chronically-ill individual a lot of time, energy, and exacerbation of symptoms.
9. Thou Shalt Remember Important Events.
I'm not just talking about birthdays and Christmas.
A major doctor's appointment, lab test, or new medication are all important events to the chronically-ill person.
Try to sincerely ask, “How was your appointment? How did the lab test go? How's your new medication?” The chronically-ill person will appreciate that you remembered, and that you cared enough to ask about it.
10. Thou Shalt Get To Know The Person Behind The Illness.
The illness may be a part of us, but it's not a part of who we ARE. We want to be known as more than “that sick person”.
You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for.
(It makes for better gift ideas too -- rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)
Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support.
Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease.
That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic -- ourselves.
Below is an excerpt from the book called "They Will Never, Ever Understand: Learning to Accept Your Family's and Friends' Emotional Limitations"
They won't understand. No matter how hard you try to explain the suffering that Lyme disease causes you and how much they attempt to empathize with your pain.
Unless they have Lyme disease, too, they won't get it. With your help, they may grasp certain aspects of your suffering better, but they'll never be able to jump inside your skin and know what you are going through, and frankly, many won't want to.
Their problems keep them occupied and having to empathize with you or support you in any way may be asking too much.
Don't bother talking yourself blue in the face, trying to justify to them why you can't work. Why you can walk a mile but can't go shopping. Why you need organic food at every meal, and why loud places, people and perfume are a big deal.
Your loved ones have never seen an ill person look so darned healthy, and your behavior contradicts what a sick person is supposed to act like.
Their idea of illness is a person with cancer, not you. It's someone who is pale, has dark circles under his eyes and who can barely move.
While that may describe you, you've also been known to go dancing from time to time, and how is it possible for a person to be sick and swing dance?
Even more baffling is your social behavior.
Telling your family that Lyme disease has affected your memory won't stop them from wondering why you can't remember to turn off the stove and why you seem to pay no attention to the little details that they share with you about their lives.
Your bouts of unexplained sadness will be a mystery to them. While they know it's no fun to be sick, they will yet wonder why you can't just pull yourself up by your bootstraps and be a little happier.
They won't comprehend why you always leave social gatherings early and why you can't listen to their detailed, drawn-out stories as often as they'd like.
Not only will your family and friends not understand your symptoms and social problems, they also won't grasp the financial hardship you endure because of Lyme disease.
Those whom you expect to give you a few hundred bucks to help pay your rent won't offer you a dime, and those whom you don't expect to help you, just might do so.
Also, your friends' and family's idea of hardship may be having no money in a retirement account, while yours is not being able to pay the electricity bill.
They don't know just how bad off you are, and if they do, they have never experienced such hardship themselves and therefore can't have compassion upon you.
Let's face it, the average human is confounded by the apparently para-doxical behavior and needs of the chronically ill.
Only a person who has experienced your symptoms and suffered similar hardship will be able to grasp the nuances—or blatant inconsistencies—of your behavior and offer you compassion.
But even those who have “been there” cannot empathize 100% of the time, because they forget what it's like, and even they have limited capacity for pain and annoying symptoms.
What a shame that your family and friends can't adequately support you during the most trying time of your life!
Yet, it's the sad reality for many and is the source of much pain and suffering for people with Lyme disease, but what's sadder is that some Lyme disease sufferers allow it to be a reason for them not to heal.
They become bitter and resentful, and it consumes them.
They continue to expect things that their friends and family cannot offer, including financial support, en-couragement and understanding of their circumstances. Expectations keep them mired in illness and sadness.
It hurts to realize that people can't be there for us, especially those whom we most expected would be there with us through our agony.
But here's the rub. If we are to heal, then we have to let go of our expectations. We have to accept our loved ones and know that they are human, flawed and in pain, just like we are. Our suffering may be harder for them than we realize.
They may want to alleviate our pain but are helpless to heal us, and that causes them anguish.
We need to focus on the good that others have given us. Recall the kind words our sisters and brothers have spoken to us, even if, in other moments, they have been cruel.
Hold on to fond memories of our mothers' encouraging us, even if at times, they have chastised us for our behavior.
Remember the nice evenings out which our friends paid for, even if they forgot us when we really needed help with our bills.
They did the best they could, and that they have been able to do anything kind at all shows that they care about us, even if their capacity to give has been limited by their humanity.
Trying to see your illness from their perspective is likewise beneficial.
Imagine, for example, how frustrating it must be to have to repeat the same story six times because the person you are telling it to either can't remember the details or wasn't listening to you.
How difficult it must be to live with a person who suffers from bouts of depression and Lyme rage, no matter that you know that their episodes are due to Lyme disease!
How taxing it must be to wonder if you are going to have to support your five kids for the rest of your life without the help of your spouse, because he or she is ill.
In my theology, only God isn't flawed. Only God can love us unconditionally.
In the meantime, for the sake of your health, for the sake of learning how to give and receive love, let go of the idea that others should understand your suffering. They can't.
They never will, just as sure as we can never climb into another person's soul and see their heart up close. It doesn't mean that they don't love you. They are simply human.
Holding on to this realization and focusing on the good that they have given you, as well as the good that you can bring into their lives, will bring you great freedom and in turn, lighten your Lyme disease burden.
Note: This article was written by Geri Teitelbaum Fosseen, the former Director, Ames Chapter. Geri was an Iowan who died of Lyme disease complications at the young age of 32.
Looking Good, Feeling Bad
by Geri Fosseen
“Oh, but you look good!”, they say, thinking they're making you feel better. Inside, your stomach grows tight, you inwardly cringe, and fight the urge to scream. “On No!, not this again!”, you think.
Welcome to the world of Invisible Chronic Illness. This is a hard world to live in, one in which you're positive no one could possibly understand how hard it is to live like this.
Well, I'm writing this to tell you that someone does understand. In fact, anyone living with Lyme Disease probably understands.
Your body hurts, fatigue seems like such an ineffectual word for what you're feeling, you constantly struggle to find words you want to express, and yet, “You LOOK great!"
That anger you feel inside, the shame at feeling angry and the depression that follows is all very normal. We all go through this.
Throughout my illness, I have heard so many fellow patients express frustration at this issue that I thought it might be time to take the covers off of it and expose it for the wide-spread frustration that it truly is.
I could write about how everyone is just trying to make you feel better about yourself, or that they don't know they're hurting you, but frankly, that's not the point here.
I'm here to talk about what it feels like to hear these things, not to defend those who say them. Let's just make the assumption that no one saying these things is purposely out to hurt us and not bring up that side of it again, ok?
So, that leaves us with how it feels. How many words can I come up with to properly express what you've probably felt upon hearing one of these statements?
Let's see; frustrated, confused, angry, sad/hurt, flattered, mis-understood, minimized and.....; I could go on, but let's settle with these.
Sure, it's frustrating, you want those around you to understand what you're going through and to always know the exact right thing to say. You're busy living like this, the rest of the world should find a way to understand without frustrating you, right?
Definitely – you think you should feel complimented, but instead you're angry. You think you should thank them, but instead you want to scream and cry.
Why doesn't anyone understand you? Why can't they see how much you're hurting? How scared you are?
It's very difficult to feel alone and when you feel that no one understands you, you do feel alone. You begin to feel that you're doing something wrong and everyone else is right. It hurts.
There is still that one little tiny piece of you who is happy to know you're hiding it well. Of course, then you start all over with all the other emotions, but still, that little part of you is there.
You work so hard to help your friends and family understand what's happening to you, but no matter how hard you try, they just don't seem to get it.
When they tell you how good you look, sometimes it can feel like they're saying they don't believe how hard it is to live like this. That maybe you're exaggerating. You begin to feel very small inside.
Ok, so now you're wondering what part of this article offers up the solutions to all these feelings.
Well, that's not what I'm doing. I'm trying to let you know that we ALL feel these things. That you are NOT alone.
You're not ungrateful, mean-spirited, malingering or anything else except human. You are living with a horrendous disease that manages to stay invisible.
Fantasies about wishing you had a cast on your leg, beginning to use a cane so people will stop staring at you when you get out of your car in a handicapped space, wondering why the 80-year-old woman in the supermarket seems to have an easier time than you...; these are all normal.
Knowing that they are normal may not make those feelings go away, but I'm hoping that at least you'll allow yourself to feel them and not beat yourself up for them.
If you'd like to read more about invisible chronic illness, I suggest the book “Sick and Tired of Feeling Sick and Tired” by Paul J. Donoghue, Ph.D, and Mary E. Siegel, Ph.D.
This book accurately explores the difficulties of living with an Invisible Chronic Illness, and I highly recommend it.
Also, talk about these feelings with other sufferers. Bring it up at your support group meeting – you'll be surprised at how many people will look at you gratefully for bringing it up.
When I first got lyme I walked around in a world of my own..No one understand, only my husband.. My mom thought I was nuts, my friends did not want to deal with it, my sisters lived in there own little world.
Then I opened my mouth..I told them "I did not ask for this, this was given to me"...I told them "I don't like being sick, I"m lost and feel alone, please stand by me"....They finally saw the light...It was hard as at times I did not even get out of bed. But they did come around, and in the end were a support to me..But I had to fight with them for the support...
I could not be mad at them for this, reason being, I did not even understand what was happening to my body...We had to learn as a family, and we did....In the end it all worked out.
Be open and honest with your family, don't hold back..When in pain, tell them, when depressed, tell them, when feeing alone, tell them..If they don't want to understand, you always have us.
I wish you the best of luck in your treatment.
02/27/2010 03:43 PM
Posts: 6940 Group Leader
Oh yea Betty I know Jaime put that in the Facts Section...my link is actually to THe Spoon Theory - which is a really good way of explaining to others who do not understand = and may help them to do so...
The sight is "but you dont look sick"...but the direct link IS to the 2 page spoon theory...A really really good read....simple and again may help others get the picture of what our days and lives are like...
I also feel guilty. I got married last June 2009 and two weeks after I returned from my honeymoon my symptoms began. Every moment since then my new marrriage has been an onslaught of doctors, meds,illness (you know the drill)! I worry every day that my infeant marriage won't last. But my husband reminds me that it was "for better or worse" every single day. He gives me the strength and hope to continue fighting. Remember to look at the bright side when you can. You and your daughter are together and fighting together. You are not alone! I always remind myself that I didn't ask for disease so I shouldn't feel guilty (at least I try). Remember if the shoe were on the other foot wouldn't you stick by the loved one who was ill and take care of them. Why do you deserve any less than that?
jsher is absolutely right! My hubby and I got married and within a few short months I was sicker than a dog! I feel like my poor husband married one person and is now stuck with another....
But he is nothing but supportive, loving, caring, and the first to push me to get better. And I know I would do the same for him so I have to try to keep that in mind!!
Easier some days than others! I have my days that I feel really down, oh woe is me....I feel like a failure to our child, my hubby, my family, ect.
But you really do have to keep your spirits up in your head. No one can fight for you. It isn't your fault and NO ONE would ask for this!
FIGHT! Fight for you, fight for her, fight for your life back!! FIGHT! It is what you CAN do....
FIGHT! For your sanity!
FIGHT! When all you want to do is curl up in your bed and sleep...
YOU CAN DO IT!!!!! FIGHT!
03/01/2010 04:53 PM
Posts: 32277 VIP Member
look also in TIPS; when this board was 1st created 3 yrs. ago, i came over here and left many links in my betty welcome package back then.
look in tips for something from me ... many links.
then click on spoon theory there; i know i put it there plus 2-3 other inspirational things helping to explain it well ok.
03/02/2010 03:06 AM
Posts: 13 Member
Thanks so much for your support. I am so tired lately that I have not even been on my computer much. I have had more to do and as you all know limited energy.
I am going to make a point of logging on everyday to check in. I am going to make that a goal.
My ex was abusive so it was hard to leave. I was pretty much a captive because of money. I had been a Stay at home mother. Before my daughter was born I had lived a very full life. I had been an adventurer and successful career woman. I gave it all up for love. Now I am too sick to work and now my contacts have all moved on. I even think my skills are outdated.
I have late stage Lyme so I will be sick the rest of my life. I just hope and pray for a remission so I can reorganize my life in such a way that I can take care of myself and my child without having to be a nice to a man who only hurt me and disappointed me.
The only family member who understands is my brother who is basically my caregiver. I was his caregiver growing up so he is returning the favor. He understands because he sees me sick. But even he sometimes has to be reminded that I am doing the best I can. I think because I was such a type A overachieving over-caretaking person that everyone in my life resents that I can no longer be a superwoman. My mother thinks I am a failure and not trying hard enough. She thinks by reminding me of who I was that this will motivate me into doing better. This of course only serves to make me feel like dirt. If it weren't for my daughter I think my depression would overtake me and I would not want to go on. But I could never do that to her and I would never leave her alone with this horrible disease.
You all are the only people who really get it and it is relief to be able to say what I am feeling and have someone really get it. Thanks.
03/02/2010 06:09 AM
Posts: 74 Member
My dear Stardust,
Please do not feel guilty! You already have too much on your plate as it is. Never let the ignorance of others contribute to your mental state!
03/02/2010 11:53 AM
Posts: 332 Member
Hang in there gal!!! It will get better! Keep telling yourself that!
We are all here no matter what you need. We understand.
Rant, rave, vent, let it all out lady! We'll be here beside you!
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