Thursday, April 28, 2011

Empathy: Cancer versus Lyme

By Alix, SpiroChicks Co-Founder

A couple years ago I flew home from a Hawaii vacation and landed a new symptom: Bell's Palsy. As the plane touched down, the left side of my face was drooping, an ice pick seemed lodged in my left eye and temple, yet my facial skin and half my tongue were numb. I'd never had this symptom before. I was exhausted but couldn't sleep. I couldn't get up the following morning to take my kids to school. I was a sleep-deprived zombie. I was in a ton of pain. I was riddled with fear about my face. At noon, I forced myself out of bed to begin calling doctors. A month later, I would be diagnosed with late stage Lyme Disease.

One of my relatives also flew back from Hawaii that day, too. He was very ill due to chemotherapy treatments for Stage 4 cancer. He read books in a pool recliner during our entire vacation. We were impressed. The morning after we flew back, while I lay in bed with Bell's Palsy, he went to work running a large organization and worked a full day. Everyone was impressed. His family and employees all catered to him.

I called my best friend to tell her about my new facial symptoms. She told me I just need to "think happy thoughts." She severed our friendship that day. I've hardly talked to her since. My medical problems were too much for her.

Last year three family members chose chemotherapy and radiation treatments for cancer. I knew they would temporarily have the awful symptoms I've dealt with for twenty years: exhaustion, nausea, pain, digestive problems, and cognitive difficulties. Unlike my ongoing and unpredictable exacerbations, each of their treatments were acute and usually scheduled. Two of my dear relatives died.

Unlike Lyme, none of my relatives with cancer experienced a lack of empathy in addition to all the other trials they faced. Like others around them, I ran errands for them, attended chemo infusions, did research for them, and offered remedies that have worked for me. Unlike others around them, I did all this for them while I was feeling as crappy as they were.

I've been the patient in an IV room a few dozen times and only once did anyone come with me. (My brother, who was only in town for a day so he had no choice if he wanted to see me.) No one has done research for me. No one offered to do errands for me. No one has sent me a care package. Family members berate me for my "special needs;" others snicker behind my back about my special diet. I even found out that some moms at my kids school were telling others that I wasn't really sick, that my medical problems were designed to get attention. (Hello, anyone remember Mandy from Under Our Skin?)

"I should just shave my head," said one of my dear Lyme friends, regarding the difference between how people treat chemo and Lyme patients.

What she meant is that we are feeling just as bad as chemotherapy patients, yet there is a huge gap in support and empathy. Is it that people can't see how bad we feel on a day to day basis? Why aren't we lauded for keeping up with life while faking that we feel better than we do? We do this for others - to be social. (See my post on the Ginger Rogers Club.) Do our loved ones forget how hard it is for us to keep up with life, every day of our lives?

Is it that cancer is terminal, while most think Lyme is not a fatal illness? (Lyme patients do die of heart failure and suicide.) Is there is no perceived urgency to help us? Have we already worn people out with years of "hypochondriac-sounding" symptoms? Are people wary of being worn out with long-term favors that will never get returned?

Why is quality of life valued less than quantity of life?

Recently, I had major abdominal surgery. This was a scheduled event, self-contained, like a cancer patient's first chemo treatment. I was blown away by friends' empathy and willingness to help manage the many moving parts of my life and the lives of my children. I was frequently moved to tears over their kindness. I sent out a thank you email every couple days naming 15 friends who had stepped up. This proved that lack of empathy around my illness wasn't just me - that people care, but they operate best around scheduled, contained events. They operate best when they can literally see what's wrong.

After a certain point, I felt that people had already done too much. I stopped sending email updates about how I was doing for fear of more friends dropping me like my former BFF. I didn't want to ask for more favors, and the offers slowed down. Due to the Lyme flare-up post surgery, I needed help for much longer than anyone knew, but few were there for me. I was back to being a Lyme patient. I still needed help. Again I struggled alone, only more depressed than ever since I'd been doing so well before the surgery. I was about 20% of my pre-surgery self.

The only friends who really understood my extended recovery were my Lyme friends. Calls, cards, flowers, emails, and unexpected favors kept arriving, long after most of the non-Lyme crowd had forgotten about me. For them and the handful of friends who kept checking in on me, I am forever grateful that their kindness made me feel loved and like I still mattered. Lyme patients need a reason to get up and fake it for everyone else. They gave it to me, and you know what? It's their empathy that has given me the will and courage to keep getting out of bed.

44 comments:

Lyme is real said...

Alix, we are so blessed you are writing again. A dear friend recently told me she was so glad I had a support system of people who understood exactly what the girls and I are going through. I just wish we weren't all sick! It is interesting to think of chemo as being made up of scheduled crappy days. A break from the brain fog, nausea, fatigue and pain sounds nice, doesn't it? ; ) I think surgery is so tough on our already stressed systems. I experienced nerve damage and RSD symptoms after knee surgery; terrifying for months. Very slowly things started to improve. Hoping the same for you! Take care and welcome back!!!

Kim said...

Such a brave post. And soo true. Thank you for writing this. You KNOW I feel ya. XOXO

Alix said...

Thanks so much LiR and Kim. LiR, thank you for uplifting me with your heartfelt posts here and on your own blog. I hope we can meet one day SOON when we are well. @ Kim, OMG, what would I do without you? I met you right after my former BFF dumped me. This is some harrowing journey we are all taking together. I'm just so grateful for you gals and a few dear friends. xoxoxoxoxo

Keith Smith (themadchemist) said...

Alix

You read my mind and put it in words. The hardest part of Lyme is slowly learning who your real friends aren't.
Friends I considered family told me to take prozac, I was just depressed.
Even after the positive IGeneix Labs.
The staggering denial by the medical profession only added to this feeling of insanity.

I've been Lucky. My wife Tammy of 25 years, as always is by my side and my mother and father are closer then ever in my life.

Tammy's side of the family have all but disowned us. I was thrown from my sister-in-laws house under threat of calling the police, which lead to me driving 9 hours home alone and my folks having to wire Tammy money for a rental car. My father-in-law had the police at my front door on christmas eve after he was asked to leave. Both have said Tammy should leave me, and they cant even say why. I've had to ask friends to leave my house due to their uncaring and down right destructive attitudes.

Lyme has destroyed! But only the veil of pretend that hides the way people really feel. I don't judge because pre-Lyme I was one of them. Sometimes I find myself wishing others could be me for a week, just to open their eyes. All the Pain of Lyme has been worth it, for the Empathy I've gained.

Others have filled the void left by the departed. We have had a Fabulous family move in next door. They are in their mid 20's and have 2 wonderful kids, Jace is 3 and Bethany 7. Unless you can become as a little child you can not enter into the gates of heaven is proven to me daily. Children seem to understand my disease better then adults. They understand my needs and even remind others, even at 3. I don't believe in coincidence, they moved here for a reason.

As for the cancer vs Lyme. If you Earth and are taking antibiotic, natural or pharma, YOU ARE ON CHEMO AND RADIATION. Tell people that, its the truth. When people ask me what the treatment is I say same as cancer - chemo and radiation. Rifing is also radiation. You are not lieing and you should see the reaction.

Dont shave your head Alix, unless your planning a trip to the airport in an orange togo with a tambourine, but then if that was the case you'd probably not make it from exhaustion and if you did you'd be to tired to dance once there.

tmc (spirotech)

Lyme is real said...

Looking forward to the day we meet in person, well. It will come!

Anonymous said...

Bless you for telling the sad truth that everyone I know with Lyme experiences. I wish you continued support from those who understand and all the strength you need to see this through. I really enjoy your posts. thanks.

Kristie said...

This really touched me, Alix. I recently had an uncle going through Chemo. He was diagnosed after me, and he received a HUGE outpouring of love, support, assistance, etc. from the family.

He received a benefit BBQ, even though insurance covered his treatments, while my husband and I had to pay $50K out of pocket for treatment. No one even calls to check on me.

He is now in remission, and I am still struggling to get better. Even after I had a bad episode in front of the family, they still don't bother to call...

Thanks again for sharing this. It is so tough for us all to deal with treatment, and with the way we are treated. I keep trying to raise awareness daily, and hopefully things will change for us all soon.

Sending love-
Kristie

Nell said...

I get more sympathy when I have the flu. I honestly don't understand it all. I would say that people can't truly care unless they have felt what we're feeling but that isn't true because, like you said, when someone has cancer the troops are rallied... as they should be.

But like you said, we are going through life altering/changing and devastating symptoms too, and often for a very very very long time. Thank you for this post and your honesty.

It's been on my heart lately with the apparent lack of sympathy of concern I've felt from family and friends.

However, having said that, there are a few that are totally in my corner and I love them more than they'll ever know.

Julieslymediseasefight said...

Well said!!!

Alix said...

@Keith, I can't imagine what looks people give you when you say you are on radiation and chemo! You are so lucky to have Tammy and the family next door. My circle of friends is smaller these days and it's more manageable and more supportive - the best combo for positivity and healing. Don't worry, we were only musing about shaving our heads that day. LOL

Alix said...

@anonymous, thank you. this is the sad truth, yet I still am on the fence about sending it to my non Lyme friends! Seems the more we talk about our illness the more people go away.

Alix said...

@ Kristie, wow, a benefit BBQ in contrast to your non covered expenses and having an event in front of the family? What are people thinking? They just have no freaking idea, do they!? I've spent crazy amounts annually on this disease before I even knew I had it. Anywhere from $25-60K/per year since 1996. No exaggeration. I've never asked my one living parent for help and he's never offered. I can't imagine all the things I could have done with that money instead of throw it at Lyme. I'm so thankful for my husband who works hard to pay for all this care.

Alix said...

@ Nell, thanks for sharing your thoughts. If only people could understand that we feel *worse* than just having the flu! I hope Under Our Skin is widely watched when it hits PBS.

Anonymous said...

As the spouse of someone who was diagnosed last year with Lyme after being sick for at least 3 years this post really rang true. It is very isolating for both of us. Although our family has given us their support and we have friends near by, it is hard to keep that support going for so long. With cancer there is usually an end of some sort. With Lyme it just seems never-ending and because there are good days and bad days if someone sees my spouse on a good day they assume he is back to normal. I should tape the bad days at home when he can barely stand because he is dizzy and we have the same conversation 15 times in a row because he doesn't remember anything from one moment to the next. Then they "might" understand. I try not to get bitter about because if the situation were reversed I don't think I would understand either.

Anonymous said...

I understand. Your blog post hits too close to home, and I can't think about it.

I'm being treated via the Marshall protocol using olmasartan/olmatec and things have vastly improved. People in my area with it appear to be cured. I'm so hopeful on one hand, and yet not, on the other.

Tonya said...

It's good to hear others going through the same thing. My family, although supportive, gets sick of me being sick. (Like I don't?) It has gone on for so many years I think they get burnt out hearing about it. One thing that made a huge difference was my mom went to a seminar and talked with lots of other lyme patients and the doctors at the event. That really opened her eyes. My work was the most unsupportive. I won't get into what they did to me but I ended up having to resign after my FMLA ran out. Now I'm unemployed trying to get disability for all the years I've paid into the system I doubt they'll even approve it even though I cannot work. Sigh, I know, preaching to the choir.

Anonymous said...

To compare two illnesses like this is unbelieveably offensive and shallow. Though I'm sure you will remove this comment, you should be ashamed of yourself. I suffer like you do with Lyme and understand everything you said, but you went WAY too far comparing it the way you did with a title like "Lyme versus Cancer." You wrote a competition style blog that is so insensitive to cancer patients I'm appalled. This is shocking. We are all suffering. I would still rather have Lyme than Cancer anyday. I go to a Cancer Center every week for my infusions and I am one of the sickest Lyme patients there is, but I am still glad I don't have Cancer.

I get your point, but to make such a comparison to sick and dying people is beyond reprehensible.

Alix said...

@anonymous, thanks for your perspective. I don't know why I'd take your comment down. I don't feel the same way you do about cancer. I would never ever choose chemo or radiation. I have confidence in natural diets & treatments, so I just feel sorry for those who don't know. Choosing natural is a rarity, but It's not rare fir those who do to get full recoveries, like my third relative who did radiation, then when her cancer came back went to OHI and is now in remission. Anyway, from my perspective your anger at my comparison is misdirected. It should be aimed at the MDs who don't give cancer patients a choice. But this all gets us off topic. My main point was merely that lyme patients feel as bad as chemo patients and typically for much longer,
but the potentially fatal part of cancer highlights how supportive & empathetic people can be. It's not a zero sum game. I'm only asking why that kind of support is rarely directed toward a lyme patient.

bonbons said...

Thanks Alix, this was encouraging, just to know there are others out there who feel as I do. I don't even know how to begin to explain to people how I feel, so I rarely try. It's sometimes has scared me how good I can "fake" it, and look like I'm fine, when I'm in terrible pain. And my brain function and social anxiety has caused me to just stop being around people. I'm also choosing all natural, and going soon to a place called The Hansa Center. I'll let you know how it goes. Blessings to you on your journey.

Anonymous said...

WOW WOW WOW!!!! I have a very, very close friend fighting lyme right now. In the 13 months i've known her I have seen many of her longtime friends disappear for many of the reasons you describe. It's heartbreaking to see. Helping a lymie is a commitment not unlike marriage...Keep up the fight! HKNL4eva

KNeely1010 said...

Great article! I can attest to the fact that I would rather have cancer than Lyme because I have had both! Before Lyme I was diagnosed with breast cancer and had a bilateral mastectomy. I was treated very aggressively with chemotherapy. My oh my how the cards, flowers, and gifts came rolling in. Some were from relatives and friends I hadn't heard from in ages. Then I got Lyme and co's. I've been terribly sick for 21 years now. No flowers, cards, or gifts this time! Not even phone calls just to see how I am doing. Cancer is indeed a terrible thing...but I'll take those "sick days" anytime over having Lyme and being so sick for all these years. No family or friends even care how sick I am...they just don't get it! Oh...and let us not forget that insurance companies never question a cancer diagnosis; but they won't pay for Lyme treatment over 28 days!!

Ann-Marie said...

Thank you, Alix, for putting into words what so many of us experience. It is truly perplexing why so many react this way to Lyme.

Emily said...

Came by way of my friend's FB and so glad I did. You have posted what I have been to chicken to post and I commend you for it!

I have Lupus and other goodies but it's the same concept. Well people "get" Cancer. You either get well or you die. I am not saying that cancer isn't horrific but one way or another there is an end to it.

Healthy people can't wrap their minds around illnesses where you stay sick forever. Most of them don't want or can't take care of us forever. I call us chronics "the people in the middle.

I'll never forget the time I was getting my Orencia IV and the nurse told me, "I give IVs to people with Lupus, RA and other similar diseases and you people ALWAYS look worse than my cancer patients."

Bravo once again to you!

Alan said...

Alix, I just found you for the first time, and this was the first article I read! Where have you been all my Lymelife? Kim is right...this IS a brave post! But contextually, what do we have to lose? Those who have chosen to stick it out for the long haul probably won't leave us no matter what we write, do or say.

Have I been an ass to my loved ones at times? Yes, of course. And even when I was aware of my harsh words or reactions, I still lashed out, helpless to control my emotions. But as I tell those few who listen, "Hey, at least you have a choice whether to live with this illness or not. I wasn't given that option."

I had to laugh at myself, though, as I watched your video on Earthing, I muttered under my breath, this SpiroChick doesn't LOOK sick! How many times have we heart THAT one!

Blessings, and keep up the awesome work!

Anonymous said...

As the spouse of someone with lyme, I understand how you feel. But perhaps it would be constructive for you to try to write a post from the perspective of your friends and family members who are not as sympathetic as you want them to be. Are they bad people? I doubt it. So why aren't you getting what you want from them? What is it like to be your family member, your spouse or your child? While they don't feel miserable like you do every day, they inevitably have to orient their lives around you and your needs. Do you recognize that this isn't fun for them either? Your family ends up being almost as isolated as you are - and perhaps even more powerless since they can't help you heal. And that's just family - why would you even expect your social acquaintances to understand what you are going through? Do you make it clear to every one of your family members and friends every day that you are thankful for whatever support that they are able give you - so they want to give you more support? Do you recognize and acknowledge all the little and big sacrifices they all make for you every day? Or do you really expect them to give you as much support every day of your multi-year illness as a cancer patient that may die in months? That is asking and awful lot from people. The real risk I have seen is that lyme patients can unintentionally alienate and burn out their friends, family and spouses - I worry because I see lots of people posting here that they feel entitled to more support and empathy and they are angry they aren't getting it - which is exactly the wrong way to make people feel like they want to support you, particularly over many many years. So how about a post from the perspective of the caregiver, family, friends and spouse? Can you help lyme suffers be more empathetic to what they go through as part of being in your life?

Mandy said...

Alix, thank you! What a brave and honest article. It is so hard to have people understand that everyday you are sick, even when you don't look sick. So many of my friends have said you look terrific, how is it possible that you are in pain? It is so difficult. Hopefully, one day Lyme will be recognized and people will understand. Take care of yourself!!

Keith Smith (themadchemist) said...

WOW, What a Hot Topic.

I hate the anonymous option, not because I care who you are, just that there are so many it's hard to address the anon posts not knowing if they are all the same person, but here's a try.

Anon 4/29/2011 11:46:00 AM
I too am on the Marshall Protocol. I started it in Dec 2008. I've seen fantastic results. Glad to see a fellow MPer on Spirochicks.

To Tonya
That's sad about your work. I was a high school teacher. The MP requires light restriction and my HS covered my windows and installed incandescent lighting. I was so lucky to have the support of my school district through this. I still have a basket of cards that came in care packages my 1st year off. As far as the Lyme diagnosis, Let them call it whatever they want to in order to get your SSI.
Most all autoimmune diseases are Bb or some other bacterial infection anyway.

Anon 4/29/2011 03:44:00 PM
Wow, that real was a great laugh. Thank you for your post. Honestly if you do real research into cancer you will find that it is bacterial/viral in nature, look into Dr Raymond Rife's work in the 30's. Cancer is so overrated as far as diseases go and draws so much attention and also money from real research that it sickens me. I'm not making light of cancer, my dear friend Brian and my aunt both died from this dreaded disease. But the post isn't about which disease gets the gold, but rather why we and many other chronic and YES potentially deadly sick people are perceived.

To KNeely1010
Thanks for your perspective. I was told by a mother that kidney stones are worse then labour. As a male I'll never know, but stones hurt. I've often WISHED I had cancer rather then Lyme just so people would believe me.


to Anon 4/30/2011 12:43:00 PM
Again a brave post, but not sure your getting the point. I will talk for myself alone, but I feel I may address many of those expressing glee with this post.
I don't expect anything from anyone. With that said I think that the issue is lack of understanding. Cancer is advertised, Lyme is denied by the professionals we depend on to make us well. This insurance driven medical attitude bleeds through in to the idea or perception of what Lyme is or how it effect the victim.
You wrote: "I worry because I see lots of people posting here that they feel entitled to more support and empathy and they are angry they aren't getting it"
I had 2 friends married with a child. I was very neural and they decided to visit. We warned them that my sound and light sensitivity was out of control. All I remember was sitting on the couch as they screamed at each other and I held my hands over my ears and cried in pain. They fought the whole time they were here and took breaks to tell me I should "man up" and see a shrink. I was just depressed. What we're talking about here isn't begging for BBQ's, just respect. I'll again repeat I EXPECT NOTHING, but real friends tell you when you have a booger on your face and will even help to wipe it off.
The Real issue is that some people are not care givers because they lack the Empathy needed. Their Ego is running the show. Believe me I was one of them pre-Lyme.
As a Lyme victim I have asked my wife to put me in a nursing home due to the guilt I free from having to constantly ask for help. The burden I cause on others causes me great distress. The thing I really am looking for is what my friend Brian told me the night he informed my wife and I he had cancer. I asked, Brian how do we play this. He replied. Just be my friend, like you always have been. From that point forward we never talked cancer, but we laughed, saw movies, ate out and cherished each other as all people that love each other should.

tmc (spirotech)

Kim said...

Cancer has gotten some of it's press by people winning big lawsuits against insurance companies who denied coverage. Hmm.....

Treya said...

This was an excellent post!! AND so very true. I think its a few things really. Definitely that fact that cancer is terminal is one. I believe its because so much of our illness is hidden. It affects our life on so many levels that people aren't aware of. People can't possibly understand how difficult it is to have to do research on top of being sick How difficult it is to deal with disbelief on top of being sick. To loose ones identity from loosing jobs, social life, etc. It is just SO multifaceted. People just aren't aware of how all these other elements make life with this illness so hard.

My blog: http://jen-mecfs.blogspot.com/

km said...

I was 29 years old, single and thought I had a ton of friends when I had my first round of Bells Palsy and was finally diagnosed with Lyme. The only good thing I can say about my Lyme, I have 3 great friends...two stuck with me the entire time. I have 1 friend who finally understood that I wasn't seeking attention and that my erratic behavior wasn't just for attention. When all of a sudden, I was tired and couldn't go out, I wasn't trying to weasel my way out of anything? Lyme showed me who my friends are. It also taught me to embrace every good moment because I never know when they're going to happen again. Lastly, it also was great for weeding out the horrible boyfriends. If they couldn't handle dating someone with a chronic illness, then they sure as heck couldn't handle marrying one and living their life with them.

People's lack of empathy is sad at times...I've often said that there are cures/treatments for many cancers...but I'm left to find my own way in this mess? I've had Lyme for 20 years now, although I was only diagnosed 8 years ago. I hardly remember my life before Lyme...but each day I strive not to let it defeat me completely. It may exhaust me, but it will never take my spirit!

Alix said...

@Keith/SpiroTech: Excellent line that really hits the point but also made me LOL: "I'll again repeat I EXPECT NOTHING, but real friends tell you when you have a booger on your face and will even help to wipe it off." I'm a pushover for bathroom humor, what can I say?

Anyway, I'm pleased we have a debate going here because if there is a gap in understanding from our loved ones not thinking they are thanked enough, those of us who think we could be better in that department can do that.

But, from our side of things, it's clear that most of us don't need a BBQ or party to prove people care and most of us feel terrible about burdening anyone with anything we don't truly need. If we are jealous of a cancer patient getting a party, it's only since it's a *symbol* of how much people rally around those with cancer. How often has anyone with Lyme had someone spontaneously throw them a get well or solidarity party? How often do people realize that none of our treatment is covered by insurance & this disease is more expensive out of pocket than cancer?

Again, for anyone missing my point, it's not a zero sum game among the expensive and lethal diseases. We just want a seat at the table.

I think everyone would agree that we JUST need those close to us to understand that we go on AND get out of bed (when we can) AND show up AND save up energy when you can't see us AND then fake it the rest of the day. And, when we just can't fake it anymore, we will cancel plans with friends and cancel the doctor appointments we can't get to and scrounge for food in the cabinet instead of going to the store. You will rarely see us at our worst.

Those who see us at our worst will inevitably question some of our choices of which activities we do and do not do - when priorities are not aligned or as symptoms rapidly morph on us. Due to the excess of care from those closest to us, this type of judgment is highly guilt-inducing, but it is false guilt.

Outside the home, few have any idea how much it takes for me to be out, social, happy, outgoing, funny... my natural personality. The only way I get to feel like "me." If I try hard enough, I "pass" as healthy, and frequently do. But, I'm actively fighting the impact of increased noise on my painful head, the ability to tell a story or follow a conversation while suffering brain fog, and somnolence that makes me want to slink into a dark corner - all the ways my body is speaking up & saying, "go home, lie down, be quiet, you'd feel much better."

I had a taste of alleviation of a lot of these symptoms pre-surgery. I've had some good periods before that, but they didn't last more than a couple months at a time. The contrast between then and now is killing me and reminded me how far I've come but how fragile the recovery is so far.

Alix said...

@KNeeley1010, THANK YOU for sharing your story. You are a unique case and I'm so happy to have read your perspective in this thread.

Thank you to all the other commenters - I love, love, love hearing from you and hope this conversation can continue.

Lyme is real said...

@ Keith, thanks for the smile. I agree, it's a great quote about who your true friends are! The debate has been good and gives much to think about. @ Alix, thank you for saying so eloquently what has been on my mind since this post began.

Keith Smith (themadchemist) said...

To Alix and Lyme Is Real, and all

Thanks for the comments on my humour, but I must confess, little of what I say is original. The "Booger" is a comment made by Leo Buscaglia, I added that a real friend would even help wipe it off.

If you haven't heard of him, DO.
I remember wearing out a cassette back in the late 80's called "Love Bus" that's a MUST hear.
His Barefoot Days was a ritual I practiced each summer (preEARTHING). Although I've never filled my living room full of Autumn leaves and played in them, YET.

Some of his quotes:
http://www.brainyquote.com/quotes/authors/l/leo_buscaglia.html

some fav's
--------------------
Only the weak are cruel. Gentleness can only be expected from the strong.

The easiest thing to be in the world is you. The most difficult thing to be is what other people want you to be. Don't let them put you in that position.

I have a very strong feeling that the opposite of love is not hate - it's apathy. It's not giving a damn.

---------------------------------
I always like to say:
the opposite of Bravery is not cowardice but rather conformity

and

I will not let consequences dictate my actions.

I don't know who I stole them from.

Sadly my only original work is a Masters Thesis that is a VERY good cure for insomnia, too bad it doesn't work on me anymore. Happily the Earthing does, if you haven't tried it, DO!

Shine On
tmc (spirotech)

D said...

If I wrote a book about the experiences, unbelievable loneliness, people thinking I am sick for attention, people abadoning me and thinking I am just lazy or something, it would defintiely be a best seller. Without a doubt.

Molly said...

I have read and re-read this article and most of the comments. It has been on my mind since it first posted. My daughter has been struggling with Lyme disease for 10 years. Most of the struggle we dealt with privately just because we don't talk to people about things that are difficult for us. Our daughter struggled to maintain some sense of independence. This became increasingly harder. She became sicker and as she did, her friends reached out to her in unimaginable ways. They brought food to her. They would come and sit with her. They would walk with her. They would meet her on her terms and on her timetable. They accepted when she had to cancel plans. They fussed over her, always concerned that she had exactly what she needed. About 7 months ago, a community of her friends who had been watching her deteriorate, decided they would raise money so she could travel to California for treatment. Another man from our area had received treatment from a clinic in Cali with great success and they wanted the same for her. So far, they have had several events on her behalf. As it turns out, on our behalf, too. Everyone has been so kind, so supportive, we have been shocked and extremely humbled. Our daughter's elementary school teachers have raised money for her, donated items to silent auctions, provided food for her events. She is nearly 30 years old; a long time out of elementary school. My lady friends have been powerhouses. Once the word was out that we were struggling, this effort took on new energy. Even our business associates, clients, and people we don't know have contributed time, money, and effort toward the goal of our daughter becoming well again. I can't even go into detail. You would think I'm making it up! Our experience has been just the opposite of yours. I am trying to figure out what the difference is. Not knowing you, I can't speak to your personal experience. I can speak about my daughter's. She doesn't talk with people about her illness unless they ask. She would prefer to not talk about it. If she's not feeling well enough for company or for an outing, she simply says that. When she does feel well enough to be with friends or family, they have her full attention. She does not expect anyone who doesn't have Lyme to understand how she's feeling. She always strives to be her true self and not fake it for anyone. Sometimes she pushes herself because she WANTS to be able to be part of something. Other times it doesn't matter how much she wants to do something, she just won't be able to. Her friends and family understand this. They don't put pressure on her. Yet, if they know she isn't well, they want to make sure she has everything she needs. My daughter is quite possibly the most compassionate person I've ever known. She never complains about her ailments, never asks why me. Yes, she gets frightened and at times feels isolated but her heart is always strong and her courageous choice is to be fully present in her circumstances. Her goal is to get well, but to also use this experience to seek a deeper relationship with her authentic self and live a life of compassion towards first herself, and then others. I wish you could know her.

Lyme is real said...

Molly, thank you so much for sharing your uplifting experiences. They warm my heart, knowing your daughter is fighting this with so much love and support. I wish it was like this for everyone and also wish there was a simple answer, but I fear there isn't.

Our situation was very similar to your daughter's. Countless random acts of kindness and a fundraiser that will warm my heart forever when everyone thought I had Lupus. Acts our family could never repay. We simply try to pay it forward.

Things became complicated when I suspected misdiagnosis. This may be true for others. It was a year and a half before we had a definitive answer. The limbo time. It's hard for people to know what to think when doctors say one thing and you believe another. I'm sure some thought I was crazy or just grasping at straws. I turned away help, when the house became such a mess because I was too embarrassed for anyone to see. For years, I answered, "How are you doing?" honestly, not realizing it rhetorical. I've lost close friends, for complicated reasons: protection of beloved places where we thought I had been exposed, unwavering faith in medical institutions we questioned, fear of a lawsuit.

Those who've remained are cherished beyond words. Lyme can carry a stigma and is often misunderstood. Slowly, I hope the tides are turning. Honest, heartfelt discussions surely help to make a difference.

Molly said...

The tides are turning but as with everything, it takes time- lots and lots of time. People with Lyme disease today are driving the research and treatment protocols. That's why everyone's part in this process is so important. We are blazing a trail to make it easier in the future. We should feel proud of that work!

Keith Smith ( themadchemist) said...

Thank You Molly,
for the greatly inspiring and positive story of your families support through this dreaded and misunderstood disease.

I too have friends, as your daughter, that meet me on my terms. I wish I could say all did, but that is not the case.

Why?

Everyone's dealing with the fast pace of life and some are too enraptured with their own world to see beyond their own pain.

A VERY CLOSE friend who bailed on me in my crisis... I am afraid to say this for fear of someone screaming "YOUR PROJECTING YOUR ILLNESS" ... but he was born and raised in NH and spent time in the gulf war (I refuse to capitalize the name of a war). I see him at a place I was 5 to 6 years ago. Lyme can sometimes reside for LONG periods before a trigger causes the final downward spiral. My fear is Eric is infected and he's incapable of dealing with his own world to see mine. When I asked him to get checked, I was accused of projecting.

I only talk of Lyme to educate, and never to friends unless asked. I'd rather be talking music or sitting around a campfire talking.

The same thing that stops a person from going to the MD when they know there is a problem and by the time they go it's too late. Some people can not deal with reality, Real Reality that is.

Others, on the other hand, have discovered that the real truth to happiness is the bonding that happens only when unconditional love is given and received.
Prior to Lyme, my love was conditional. This disease changed me. It forced me to confront Empathy, something which I had never had pre-Lyme.

My experience is that others that have suffered loss and small children are those type of people.

As for the Elementary teachers, too many years of trying to think as a child has heighten their Empathy level.

Thank You for the GIFT of your story. It brightened an otherwise average day.

to Lyme is Real:
I can completely get the "How are you doing?" honestly, not realizing it rhetorical. My motto is don't say it if your not gonna play it.

When I was a Schwan's man if someone invited me to eat, I never turned down a meal. If they didn't mean it, then they'll never ask again.
To my experience though stopping to eat with a customer usually increased the friendship.

Yum this reminds me of a time I arrived just as Quail was being served and I said, WOW, its been Ages since I've had Quail, oh and did I mention Quail is MY FAVORITE.

We had a Quail Fest.

8 )

Shine On
themadchemist (spirotech)

Anonymous said...

I was nauseated by the comparison you made here. There is a 2 letter word in your disease that defines you and that is ME ME ME.

Alix said...

Anonymous, you are entitled to your opinion. Glad the post moved you to comment. Until people understand that chronic Lyme is the most disabling and invisible illness (with patients feeling worse significantly more often than cancer patients more days of the month - see Johnson 2014), we will continue to be mocked by those like you. Lack of empathy is felt almost universally by people in the Lyme community. Open up to and accept the suffering of those around you, even if you can't see it. With all the efforts for people to be politically correct, one of the groups that is still constantly maligned are the chronically ill. No one would choose such a life.

monkey girl said...

Wow, once again I'm shocked at the lack of empathy. I know I shouldnt be, but what can I say...still always hoping people will inheritantly be good. Yes, I'm that nïave.
After finally being diagnosed in 2008 and started aggressive treatment, the fact is I will always have chronic Lyme till there is a cure.
In that 6 years...I have lost my best friend(she couldn't handle the fact I wasn't getting "better"), my marriage fell apart, most of my support system has left me hanging in the wind.
I never thought this is where I'd be in 6 years. I no longer think I will live a long life, I'm hoping I make it to my 60s at this point.
The fact is, it WOULD be easier for people to understand and sympathize if I have cancer, because guess what, I've had cancer before and people were much more supportive and concerned about my wellbeing.

To those anonymous commentors, clearly you don't understand. because if you did, this disease is something you wouldn't even wish on your enemy.
Alix, it's been forever since I've commented or contributed, but I'm here, and I hear you. Sending you cyber hugs my dear. xoxo
Cory

Alix said...

Hey Cory, Thanks so much for stepping in. I had no idea you'd had cancer, as well. You've really been through it. I've heard from quite a few who, like you, had both cancer and Lyme and they universally say they were treated far better when they had cancer than when they had Lyme.

I think it would be helpful for the "mockers" to read this list of Lyme facts, all supported by the peer-reviewed published literature: http://www.spirochicks.com/2014/09/lyme-disease-epidemic-disabling.html

In case someone doesn't read that article, I'm pasting a few bullets here:

43% of chronic Lyme patients spend more than $5,000 out-of-pocket per year for non-covered care, compared to 6% of the general population. (Johnson, 2014)

Patients with chronic Lyme disease feel unrested 20.3 of 30 days a month, “significantly exceeding the number of unrested days reported by those with cancer (12.5).” (Johnson, 2014)

Quality of Life studies show patients with chronic Lyme score worse than patients with diabetes, heart disease, depression, osteoarthritis, or rheumatoid arthritis. On a measure of fatigue, patients with chronic Lyme scored considerably worse than patients with ALS or MS. (Klempner, Cameron, Fallon, Krupp and others, 1994 – 2012; ILADS Guidelines, 2014)

Eleven percent of Lyme disease patients will be rendered disabled by post-treatment symptoms, creating at least 30,000 new disabilities per year. (Aucott et al, 2013)

But most of us suffer invisibly unless someone is with us 24/7 to witness the struggle.

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