Some people only see me when I feel well enough to get out.
Many people around here are familiar with LD as getting treated for a bullseye rash with a month of abx, and then life goes on...

Alot of people are acting like... "why is she acting so sick, it's just lyme..."

I didn't send out christmas notes to anyone this year, cuz how do you say "we are all fine", when I'm not?

This disease is really changing my social life between not wanting to call distance friends because I am sick, and I can't do much, and telling people I'm sick wehn they ask "how are you"

Does any of this make sense? Or is this just lyme brain rattle?

Wish I could remember who posted something this past month with great advise on how to tell family/relatives. Hope someone else might be able to remember who & show the link here on yours.

This Christmas I did NOT go to my sibling's xmas gathering for 1st time. I have received NO support/understanding from them since my many health problems began. "it's all in her head" mentality even after a wonderful of my July 04 dx was in our newspaper with a brief story of my being misdx for 34 years. They read it, but NONE of 3 bros. have ever commented. So I stayed away from my family's gathering plus I need to live in my dark cave, stay away from all those tempting sweets as a diabetic this year too.

04 was a rotten yr. for me: 4 dx! type 2 diabetes, chronic lyme, sleep apnea, & restless leg syndrome! uffda...05 has to be better than 04! Betty G., Iowa
 

Anyway, a lot of good explanations that may help explain our situation to family & friends:

***

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, Chemical Depression, Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart Disorders, Hypothyroidism, IBS, Lyme Disease, Lupus, Multiple Sclerosis, Neurological Disorders, Osteoporosis, Parkinson's, RSD, Women's Chronic Disorders and many, many others cannot be seen with the naked eye, but are nevertheless persistently keeping the person from enjoying life the way they once knew (this is only a sample of the dozens of illnesses which can be debilitating and not intended to be a complete list)!

Unfortunately, their families and friends are rarely 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 invisible until the person has had chemo or organ failure! Your friend or family member needs you to believe what they are saying is true, without judgment or question.

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 which 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 Chronic/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 affective only for persons in stages 1 and 2. This person does not have "good" days, only "bad" days and "horrific" days.

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 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.

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 which 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."

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 which make our painful disabilities seem invisible to the naked eye.

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; incidently, I have yet to meet someone who has 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!

No human being can be at peace with being sick day in and day out! In fact, most people become very frustrated and impatient after just a few hours; 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 like 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!

It Seems like I Am Always Saying The Wrong Thing!

What can sometimes be even harder to bear than the illness itself, 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 realize 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 which make our painful disabilities seem invisible to the naked eye.

"Learn To See With Your Ears!"

***

I tried breaking it up a bit to make it easier to read.

[This message has been edited by tabbytamer (edited 26 December 2004).]
 

i don't know why this is.i do have the support of my family. i don't understand why you(women) are treated that way..not right,,gary

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Either they get it or the don't. And it is unusual to find someone who does get it.

I don't know if I would have understood this myself until I lived with it.

It would be great if there was better awareness.

It is one person at a time.

I have handed out the booklet "But You Don't Look Sick" to care givers,etc, the story on the Spoon Theory, Tammy posted a good article, Lyme Times Special Edition, the PA LDA booklet, etc.

I have written stories in the local paper.

Mostly, I have become a hermit and have been careful of who I am around. It is tough enough to deal with this condition without adding to it.

I chose only to tell a few people...my sister and brother don't know.

It's very hard when I look so healthy but feel so awful for people to understand.

There are days where I feel okay and can do things and other days I can't.

A lot of my previous friends aren't around because I couldn't do things like I used to and they got tired of calling and asking.

Everyone has to do what they feel is right for them when choosing to tell loved ones and friends. The route I've taken has worked well for me.

As I always say, go with your gut!

Can you post a link to the "Spoon Story" Someone else told me about it. I can't find it anywhere.

Thank you,
Lisi
 

First round of telling people was pretty easy. I had been wearing wrist braces for almost a year from a faulty diagnosis. People kept saying "you're braces are off. You must be better." which I saw as opening the door.

I recently discovered a great way to tell people. When they were trying to get Pataki to sign the OPMC reform bill, I emailed everybody in my address book. I started with "many of you know I have been diagnosed with Lyme disease." I got lots of emails back from people who didn't know and asking how they could help.
 

If I make a plan with someone, which is rare these days, I have to tell them that I have Lyme and if it's a bad day, I will have to cancel. I don't know how well that goes over since I never looked better physically, have often wondered if I should just let myself go so I look sick.

A well meaning acquaintance this week called me to say that he had asked his dr. about me. His dr. suggested I go to a Lyme clinic to see a specialist. This just proves that no one understands anything. I tried not to show my outrage at the well meaning advice.

We are all so far beyond the "local Lyme clinic" where people like Camp A practice, that it just set me off that anyone would recommend it. Especially for someone who has been sick for this long and probably knows more than the clinic staff.

I've heard everything from you need a job, you need to lose weight, you need to stop getting into everyone's business, you need to lighten up, you need to stop reading stuff/going on the internet, you need to get right with God, you need to stop going to the doctors, you need to go see this specific doctor (who is a pcp and knows nothing about lyme), you need to go on the Atkins diet, you need to drink one glass of red wine a day, etc, etc, etc...

It has gotten to where I don't mention how I'm doing, lyme, how I feel, etc to any of my immediate family members

They aren't interested at all

My inlaws don't care and aren't interested either

Occasionally, one or two of my aunts will ask me how I'm doing

The other day I told my dad I couldn't do something for him because I can't drive at night. He was like 'WHAT?'. After everything I've told him about my illness...He said, have you seen a doctor, is there anything he can do? I debated mentioning that it's lyme related and decided against it and said they don't know what it is.

It's terrible and sad but I just don't want to have to justify myself or talk to a brick wall any longer. It's not worth my time, my frustration or my hurt feelings

My family considers my sister's asthma a major health concern but nothing I'm dealing with worth their time or worry

Even friends don't want to hear about lyme. I can tell that they are bored to death when I'm talking about how I'm feeling or about lyme in general

My husband is the only person in the world who will listen to me complain, ask me how I'm doing, is somewhat understanding about things (like being super tired one day, not being able to drive at night, etc) or is somewhat interested in lyme

It wasn't until I got lyme, that I realized how unsupportive almost everyone in my life is. And the thing is, I'm the total opposite. If it was a family member or friend who had lyme, I'd be interested in learning as much as possible and be supportive of them and call and see how they are doing, etc

[This message has been edited by JillF (edited 27 December 2004).]
 

No one in my family knew what Lyme was, or knew anyone with it. Much less anyone who had been "cured".

I make it a point to wear my Lymie sweatshirt when I can.

I would like to know where I can purchase a Sweatshirt on Lyme Disease and what it looks like.

I just hope it is not lyme green. HA!
 

One thing I've been doing when talking to friends or family about LD has been to give them the addy to this site and telling them that if they really care and want to know how to help, come here and read about it so you know more about what LD is and how it affects us.

My husband has seen what I've gone through the last couple years in trying to find out what was wrong. He has also seen the deterioration of my general health. He does't really understand what is going on, but is supportive. At times he can be overly solicitous and doesn't want me to even do those few things I can still do, but he's learning to allow me to at least try on those days I feel up to it.

I'm also fortunate to have another LD in the extended family (a cousin of my hubby's)that lives close by. She and I talk every couple days on the phone, when both of us are up to it.

A lot of the family got really mad at the family Christmas dinner cause she and her hubby didn't attend this year because of her LD acting up that day.

When I talked to her the day after I got my dx (which was the day after the family dinner), I really knew what she was talking about. Normally, I would not have had a problem with going or driving home myself after (about 85 miles) but this year I had to get a ride from one of my brother-in-law's (my hubby had to go back to Louisiana to work). The day itself wore me out and when I found this site a couple days later I began to understand why.

My children are all supportive, though about 800 miles away. My older daughter is an RN and has explained a lot of this to my other 2. One or another of them call every couple days, and the 1st thing they ask is if I feel up to talking. I have a few friends around here that are supportive as well, but most, as I've seen above, figure it will be 'cured' with just some anti-biotics.

I know from what our cousin is going through that isn't true, at least not for some (and seems to be a lot more than I realized before coming here).

Though I wouldn't wish this disease on anyone (not even my ex LOL) I am grateful that y'all are here for support that I can't find anywhere else.

Thanx for being here, tho I wish none of us had to be.
Ethel
 

My 3 brother's/family offer me NOTHING. I didn't go to my family's xmas gathering this year and gave no reason why I was not attending.

None of them have bothered to call, write, or email me! So it shows how much they do not care about me!

They also found out of my lyme dx in Aug. when our local newspaper had a feature story of my being misdx for 34 years & another woman's lyme dx.

Stick around UPPER people, do NOT let them bring you down with their negativity and non-support. YOU/WE ALL deserve better, and we are going to get it.
Betty G., Iowa
 

I made my own lyme sweatshirt! Took my GREEN sweatshirt and printed LYME PATIENT on both sides of it! I've had people ask me about it, and then I explained about this tick illness. They were happy I told them about it and what to look out for.
Betty G., Iowa
 

When friends and family do ask how I am - I tell them straight out but try to be brief...I also show them how grateful I am that they asked because I know it is not easy for them to ask. A lot of people are afraid of illness.

I try to educate when I can but when it all gets too exhausting I decide to take the time I need for myself and hold on to my energy.

It has been hard to see how some of my friends that I thought would be the most supportive have been the least there for me. One of them came right out and said, "I don't want to talk about disease" when she had asked about my treatment...what she doesn't realize is that in order for a person to fight these bacteria and parasites they need to know the enemy.

Take care Achey. As I have said before, I think this illness can be the perfect screening device for friends. I think that the people that have had health issues or huge challenges in their lives are the ones that are the first to lend compassion and understanding. The people that have really rallied around me have been the ones I would never have guessed would have. One of which I have only known for 5 months but she has experienced deep pain and trauma and I think it has enabled her to "get it". Thank goodness we have this wonderful community here at lymenet!

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-Gretchen W.
"If I can stop one/Heart from breaking/I shall not live in vain/If I can ease one Life the Aching/Or cool one Pain/Or help one fainting Robin/Unto his Nest again/I Shall not live in Vain." Emily Dickinson
 

I think the leader has been successful in her efforts to educate many locals...That and the fact that so many are coming down with weird symptoms, lyme and co-infections. I think once it gets to a certain % of the local population, then there is belief and acceptance.

I do beleive that my daughter gets more understanding in regards to her juvenile diabetes than the lyme.

And everyone that knows in the family became a believer with her numerous suicide attempts. Hopefully other families will be believers long before that happens.

The major problem with support and understanding is caused by the ducks that tell eveyone it is healed in a couple of weeks of abx.