Are YOU Overwhelmed by me?

This is more of an inquiry than a post. And trust me, if you are reading this post, it is unlikely that I am talking about you. Really. Unfortunately, this inquiry will NOT be viewed by the people I most want to see it. I want to speak to the people who have dumped me, cut me off, let me go, but they aren’t here reading my blog. They aren’t the ones who will be willing to answer, because they have vanished.

I had a dear friend tell me that she had taken a break from me after my diagnosis because I was “all-Lyme, all the time”. It made me realize how easy it is for me to drive people away without intending to. But, at the same time, I struggle with the meaning of friendship. It makes me wonder why we, in this culture, think it is necessary to take breaks from friends when they most need us. I can’t take a vacation from Lyme Disease, even though you can take a vacation from me. I can’t pretend that my kids aren’t sick. I have to live out loud. If that is uncomfortable for you, I really do want to know why. I have no intention of changing it, but I do want to know.

Struggling with a life threatening illness, one that you now share with your husband and your children is not easy. There is no cure. There is no protocol. In order to make progress, we need to be continuously aware of our diets, our environment, our treatments, our exercise, our stress levels. That would consume the healthiest of people. Yes, 17 months down the line, I have a better container around our illnesses, but frankly, it is still Lyme, most the time.

I want to be brave. I want to yell to those friends who have left me: “TELL ME WHY YOU HAVEN’T EMAILED ME IN 11 MONTHS?” or any number of questions.

I want to know what the challenges are to reaching out to a sick friend. Theorizing alone is no fun, so I’d like to invite my readers to weigh in on this.

Why do friends let people with chronic illnesses suffer alone?

If you sigh every time one of your friends emails you about their illness, posts something on Facebook about their illness or invites you to events surrounding their illness, why? What is underneath that sigh? Is it regret? Is it fear? Do you roll your eyes, wishing they could just go on with their lives? Do you want them to “cut the drama” and go have a beer? There will be no judgment for your honest answers. Just share them. Use an alias. I’ll take my restrictions off for comments so they can be private for this post! Share for me. Share for my readers, many who struggle with invisible illnesses as well.

How can we, as “friends” offer help to someone who is consumed by their illness when what we really want to do is just click “delete” or “hide” when we see their name in our inbox or on our newsfeed?  I can assure you, they are more overwhelmed by their illness than you are.

Is running away, cutting them off, making excuses the best way? For you? For them?

And to those of you who have the strength, the courage and the willingness to stand by the side of your friends with chronic illness, why do you do it? What draws you to support when others are repelled?

What sustains me in this illness is my Faith in people (which is sometimes flimsy, at best), Trust in friendship, and having companions on this Journey. I have no understanding around conditional friendship. Maybe you can teach me.

As my mother used to say, “If you can’t stand the heat, get out of the kitchen.” To all the beautiful friends of people with chronic illness who refuse to leave the kitchen, many thanks.

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25 responses to “Are YOU Overwhelmed by me?

  1. While I don’t have any close friends or family who have struggled with major illness, I have not made a big effort to be with/reach out to the few acquaintances (or their survivors) I know (or knew) who have, mainly because I feel uncomfortable, don’t know what to do or say. I know, lame, but you asked for honesty.

    • OMG! This is NOT lame at all! This is EXACTLY what I am looking for! Exactly. And, I’m working on a book on this very subjected, so expect to be asked for more honesty! Thank you!

  2. Well asked, Jeanne! So far, at least, I’m not finding myself reacting in this way. Maybe part of the problem is that many people don’t know very fully that they can say “no” to requests – i.e. they have, and can use, boundaries – so they feel like they have to choose between being more available to you guys than would feel right, and leaving entirely. Not everyone has this problem, but I know I used to, and sometimes slip back into it for a while.

  3. I guess one possible implication is, reminding friends that you’ll accept them even if they can’t help out as much as you might like, and that “no’s” are OK with you, that you’ll still love and accept them. (I hope you can say that, anyway! 🙂

    • Totally LOVE the “no” responses. It is the ignoring that is so painful. I had one friend who said, “I take care of people all day long, I take care of my kids when I get home. . I just don’t want to help you.” LOVED that. TOTALLY LOVED hearing that. And never did I have a moment of judgment.

  4. I think some of the problem is that people can’t be honest with themselves, let alone be honest with the people who are asking them for help.

    How many people feel guilty saying “no” when somone asks them for something? A lot!

    I think that, instead of an honest “NO”, they feel more comfortable with a dishonest “ignore the question and it goes away” attitude. Which is sad, because everyone in this world could use more honesty and truth.

    So they bury the guilty feeling, ignore your pleas, and go about their day with their blinders on.

    I may say NO to you, but I know you are ok with that. So am I. I know someday that NO will be a YES. The timing just isn’t here right now.

    • Seriously. . I love the “no”s. At least I know I’m being heard, you know what I mean? I LOVED it when my friend said, “it was all lyme all the time and I just couldn’t take it”.

      And, my when cousin was murdered, my friend said to me, “My husband died 6 months ago. I can’t be with you in your grief.” It was REALLY hard. But honest. That is why our friendship survived.

  5. I’m guessing it’s a combination of things, first we’re not fun anymore, our lives have stopped and theirs goes on. I know I can’t go out drinking anymore, or go spend a day walking at the mall. They’re lives haven’t changed, they can still do this stuff.

    Second, they get annoyed with the constant lyme talk. My sister and some friends have told me to stop letting lyme take over my whole life. LOL If only it was that easy.

    And then there’s the ones who genuinely jsut dont know what to do. Me and my mom didnt talk for over ayear cuz she’d walk away from me when i was sick and I’d be so hurt. Now I know it’s cuz she can’t see me like this. She says she feels helpless and can’t watch her child suffer.

  6. I’m one of the people with a chronic illness – have been for 20 years so I’ve met my share of all types of people. Those stay, those who go and all the stages in between.

    I think it boils down to one thing. When you’re sick, people expect you to get well or die. When you don’t do either one, they don’t know what to do with you.

    I only have one friend to whom I respond truthfully when asked “How are you today?” And, even then, I don’t go into detail.

    For everyone else, I usually make a wisecrack or just say “I’m okay” even though I’m not. In the Western world, I think that “How are you?” is the equivalent of “Hello.” No one is looking for an answer and though it sometimes makes me grind my teeth, I’ve learned not to tell people (even close family) how I really am.

    They just don’t know what to do or say – and if people are uncomfortable enough, they leave. It’s an eggshell dance. I’m sorry 😦

  7. Hi Jeanne,

    (Note: I don’t like these conversations in writing b/c the tone can be easily taken the wrong way… this is not meant to be in a catty tone. Besides, I never convey my meaning through writing very well!)

    I feel like maybe I might be one of “those” people that have been ignoring you. 😉 My honest feelings on the subject are that I have my own child that I worry about every single day of his life. I wonder when he goes to school in the morning if he will go into cardiac arrest during the day. I worry when I say goodnight to him. I worry about him every waking moment of my life. Like your children, he may not look like he is sick, yet he has a heart problem that could take his life at any moment. Over the years I have come to manage my anxiety over him and the “what-ifs.” Then, as you know, other life-threatening events happen, my husband severely breaks his leg, etc. I have to get my boy to all of his choir events, the girls to dance classes, attend evening meetings, work on my Master’s class… the list goes on. I’ve shared with you before some of the financial hardships that we have experienced as well. I guess what I am trying to say is that I have a ton of ongoing hardships of my own that I battle on a daily basis. I have really learned to sift out the extra stresses in my life. If anyone can empathize with you, it would be me! Selfishly, I am thinking that I quietly bear the brunt of my trials… maybe I wish I could be LOUDER in asking for help!

  8. Like Paul, I suspect it is a boundary issue–many people aren’t comfortable saying no, so they avoid situations in which they might be asked to say yes.

    I also think it’s possible that some aren’t avoiding you, but are caught up in their own struggles and just trying to get through the day.

    The day to day can be really hard for people in our life situation–working, parenting, dealing with our own aging parents . . . even those who aren’t sick may be overwhelmed by their own situations.

  9. Okay. Honesty. I’m good with that. What someone else said about boundaries – BINGO. Especially if you are a giving person by nature, and you can see all the opportunities and ways you could help but it’s overwhelming. So you ignore or shut off. You are spot-on with loving the blunt comments. At least the truth shows some courage and that you’ve taken the time to respond like a human.

    I’ll tell you one thing about Lyme specifically that makes me draw back – no cure. No protocol. We need some dance steps, some charity events, a walk-a-thon. Then add the use of homeopathics and reiki and other stuff like that – I’m not a fan and don’t get it. I worry people are getting ripped off, that they are using medicines and treatments that are costly and unproven. I know not all Lyme people use them, but I have this notion that people turn to alternative healing in desperation. Maybe that desperation is a turn-off? Maybe I can’t follow them in that path and so feel I’d be a terrible supporter? I realize Lyme is not researched well enough in any respect, but I’m suspicious of what I’d ungraciously term “that co-op shit.”

    Another thing – the whole conspiracy mentality that sometimes surrounds discussions of Lyme disease as a misunderstood illness always turns me off. So while I understand that the IDSA is run by bunch of assholes, when conspiracy theories emerge, I’m just out the door. I believe Lyme is real and I believe the medical community is not helping solve the problem. But conspiracy theories not only make people sick with Lyme into double victims, they also paint them with the lunatic brush and I can’t go there.

    Personally, I’m not overwhelmed by you, Jeanne. I’m often very inspired and encouraged by you, in fact. I like going over to your place to get a shot of realism and innovation. You are a great idea incubator. I feel I cannot do enough a lot. I feel like I let you down. I am a care-taker in my family, too, and I often run out of time. I wonder if many people are like me.

    Thank you for bravely asking this question. I hope it helps you.

    • You crack me up, Carrie. You never disappoint me. The thing is. . .Lyme time is slow. A little goes a long way. I really mean that. I tiny, tiny bit stretched from here to eternity. And about the alternative treatments. . many of the Lyme Literate Western Medical Doctors are using alternative treatments because their treatments are failing. All of my treatments to date have been recommended by my Western Medical Doctor. All of them. And yes, they are expensive. The only proven in Lyme treatment is that if you don’t treat, you will die. Sometimes, even if you do treat, you die. So, we gamble with everything we can. The antibiotic therapy is just as controversial as the homeopathic. And again, what is the alternative? Dead me. Dead kids. Dead husband. So, we reach out for anything the Doc thinks might work. I’m trying to think if ANYTHING I’ve done hasn’t been recommended by my doc. Hmmmmmm. . .nope. Because alternatives work as well as the Western. Neither of them win any awards for efficacy.

      So back to a little goes a long way. . . When Jana arranged flights for the boys, that love stretches. When you come over to do dishes. . stretch. Jenni, when you take my son to your house for summer swimming. Huge. Paul, when you remind me that I am strong, that affirmation strengthens me for days. And Julie, when you have to cancel our sewing date, I am relieved. Not because I don’t want to see you, but because the idea of working on curtains wipes me out, even though I know that it needs to be done. Too much help is just too much. It is, again, about balance. Always back to the balance.

  10. Very helpful info, Jeanne! I’ll remember this. Lyme time is slow; a little goes a long way.

  11. I am not overwhelmed by you. Sometimes I am overwhelmed by ME. And sometimes I feel like I go through “spurts” with you – I feel like I get going on something or some idea or some task that I can help you with from here for a few days, and then my life takes over and I can’t get back to you for a while, and I hope that doesn’t make you think I don’t care or forgot you. I guess I need to figure out how to balance better – it makes it a little tougher when both the boys are home here with me and I don’t have a lot of down time. I have all these ideas on how to help you out germinating in my head at random times, but feel like I can never follow through and am somehow letting you down. I love when I can do very specific tasks/things for you that have a time limit – it’s easy to keep to a deadline!

    Maybe when the boys start preschool/school I can follow up on all these other things… but I’m still here for you and wish I could do more – it would probably be almost easier for me to carve out time to visit and clean or cook or something like that for you if we lived nearby. That’s the beauty and the curse of having lots of ideas and thoughts and ways to help without actually being there, I guess. It’s great to know that you’re cool with honesty and us being able to say “No, but I can help later!” That makes me feel better about what I can do for you!

    • So far, I can tell you with CERTAINty, that if you offer help on any level, you do enough.

      Does that make sense?

      I want you ALL to know, that if you commented or if you even read my blog, you are helping.

      And disappointing? No. Not at all. I don’t think I’ve EVER said, “she said she was going to do this and she didn’t.”

      NEVER. NEVER.

  12. I have been let down by friends and insulted by their mates for having Lyme disease. Told I was neurotic. It hurts. Let down by another friend who offered to help me with a big project and never did and when I called to collect on the offer she said she was not going to help after offering on her own to help. We all know if we had cancer people would probably be more helpful and supportive.

  13. I do not think there is one answer to this . I have lived with a chronic illness for over 20 years. I have had a few people. I feel the ones who did not are uncomfortable by illness and can not deal with it. I also had a virus in my brain that took away my ability to eat solid foods for over 11 years. i think it scares the crap out of people and they do not know how to handle it. Most heartbreaking is that my younger brother could not handle it for whatever reason that he not only was cruel to me but cut me out of his life. I have not even seen his two children.
    SO the lesson in it for me as I see it is about self
    love- compassion for one’s self. That is really what we can count on in this life- showing up for ourselves.

    Also people have their own issues, their own problems and their own overwhelm. I also think it is very difficult for those who do not have long tern illness to understand. My motto is “love yourself no matter what.”

  14. I think the biggest thing is that people tend to do things with people they are around in their life, like go out for a drink after work, go to brunch after church, etc. So much of the activity we do with friends seems to be because we saw them anyway. I remember back in the 60’s, my mom would have dinner parties regularly with several other couples. You seldom see that kind of thing anymore.

    Healthy or sick, I never had a friend call to get together, it was always me who thought of it unless we ran into each other somewhere.

    So, when we get sick, stop doing so much, I think we just tend to do less with others since we’re not seeing them as much. “Out of sight, out of mind.”

    That was my experience anyway. I had always been the one to initiate, and I wasn’t initiating anymore.

    I also think people’s intentions are basically good, but their actions don’t necessarily follow. One friend knew I was terribly lonely and offered to come over once a week or so just to sit with me or take me for a walk. She offered a couple times, but never followed through.

    I think the problem is, our world is too busy to think of the sick. It’s sad.

  15. I’ve just discovered your blog, and let me tell you, I think it is fantastic, and very beautiful. I find that you often type what many of us are thinking and feeling!

    I actually just wrote about this in my blog as well. I edited the post so many times, because I kept thinking, “what if one of my friends or family members actually find this?”. I could never actually muster up to courage to say anything to anyone. A line that I deleted from my blog…”I know that what I’m going through right now is heavy and that this isn’t exactly an uplifting situation to expose yourself to, so I understand that you may need breaks from it. I need a break too, actually. But please, remember, I can’t take one. The only way out of this one for me is through it…and I’d really love if you could be there next to me some of the way.”

    Thank you so much for speaking out on behalf of chronically sick people. Your words are beautiful ❤

    http://www.infectiousoptimism.blogspot.com

  16. I don’t understand it either. And I would like some of the same answers from some of my friends.

    For me personally? I don’t offer to, or answer requests for help, because I am under my own shitload and can’t get out. And I have had the same situations. NOBODY ever offers to help. And when I ASK? Plainly and simply, they run, not walk. Not even a polite, “No, I can’t.” I do not mean to minimize or assess what you are experiencing, just perhaps to support it by sharing my own experience as well. I don’t have the answers. I wish I did. And I wish I had the magic wand to wave and make it all different.

    I think that for some people, it’s like dealing with any other kind of loss — they just don’t know what to do, or say, to be the most helpful…so they do NOTHING. Not exactly helpful. It’s safe. They’re immobilized. After while, the immobilization wears off, and they move forward –though in their own lives and off with ours…

  17. Galilee Wojahn

    I love my friend with lyme disease, and am never leaving the kitchen.

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