Self-Respect and Friendships: Standing Up for Yourself While Chronically Ill

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[ estimated reading time: 5 minutes 51 seconds ]
If you live with chronic illness, you may put more thought into not making people angry than the average person. You don’t want to risk rocking the boat because you’ve learned that “friends” leave you quickly enough as it is, even when you’re being perfectly kind. Not in obvious ways, no, but by “losing contact,” “being busy,” or just choosing not to say anything. You feel scared to say what you really feel, at the risk of actually making people angry, because the ones who have been wanting an “out” use this as their excuse to finally leave. Others might think these things don’t really happen, and surely we thought at first that it would never happen to us–we have the “good” friends, don’t we?–but it does.

“After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. People drop you off their Facebook news feed. Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

“This is an all too often common experience. The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.”

Well, I’m here to reaffirm that I don’t care if I make anyone angry anymore.

Last year, my health took its second drastic turn for the worst that landed me here today. I experienced a lot of actual abandonment, even from my good friends, the ones I absolutely expected to be have been there. In my most crucial moments–when I needed someone to bring me to a doctor, when I needed help in packing up the house I’d become forced to leave–everyone from friends, to family, to friends of family, decided there were more important things to do. They just. weren’t. there. Even my landlord, who had treated me like I was her own for three years, bringing me dinner and checking on me when no one had seen me outside for days, abruptly ignored that I was losing my fight with life itself and turned on me over the last $175 of my rent (which I did pay her). These events severely damaged my trust and belief in a supportive community that took care of their own.

One of my M.E. support group members just died because there was no one there to help during her time of need. These things do matter.

And it’s so heartbreaking that we’ve been brainwashed by society and past abuses into thinking that it doesn’t matter, into thinking we’re really not worth the time and bravery it takes to care for another human being… Because we are worth it.

It’s still a struggle for me to find a balance between forgiving them for not realizing how much they hurt me, and not letting it happen again. I know people aren’t perfect and I know I will accidentally hurt others just the same. It happens. But I’ve recently started to backslide. I wanted to “settle” and let people back into my life who haven’t been there, and.. for what? Out of Guilt? No sense of worth? Fear of being alone?

But what purpose could you possibly have in my life if you’re only willing to be a friend when I can come to you, when I can be your idea of fun, or when I can help you?

What purpose could you possibly have in my life if I’m in a hospital, or feel like I should be in a hospital, and you can’t even be bothered to call, check in, or heaven forbid even send a text or e-mail?

What purpose could you possibly have in my life if, when I’m unable to be the person I was prior to illness, you jump ship, deceptively referring to it as “giving [me] space” and decide that we’ll talk “when [I’m] better”?

No.

If you leave a person when they’re down, if you don’t think they’re worth staying in contact with just because they’ve gotten a disease that makes you uncomfortable, don’t be surprised when they don’t want anything to do with you, whether they get better or not.

As the adage goes, “If you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.” And that I’d personally even think of becoming friends again with someone who left me–so that when I succumb to disease in the future, they can leave again?–only shows me where I still have work to do.

I don’t want to be that person I used to be, who let destructive trespasses slide by without saying anything, who allowed others to neglect their side of the relationship but still come to me when they were having a bad day. I need to feel appreciated just like everyone else.

I am so much more than any disease, and if you can’t see that, then save us both the hassle of pretending we’re “friends” and just get lost. I’m tired of placing my worth and value in the hands of people who don’t think I’m worth it.

My ultimate decision was to stop trying to “keep” everyone and instead use my very precious energy on those who are there for me. Everyone else, I just let them go. And oh, it hurt to figure out which ones didn’t think I was worth the effort, who weren’t strong enough to deal with this extra challenge with me. It hurt even more to have assumed someone was one of the “good” friends, only to find out otherwise. That was the worst.

But in the end, what remained was only true friendship, because instead of wasting time catering to others’ needs who didn’t give a second thought to mine, my energy could be devoted to those who would actually return the love and consideration and support when it really counted. If a relationship doesn’t meet those standards, it isn’t truly a friendship at all. 

It does matter to have people around you who are mature enough to handle what Real Life entails. At this point in my life, I don’t have energy for anything less.

“I am sick of this tawdry game. I am sick to death of comforting people when all I want is to be comforted. I am sick of being abandoned by people for months on end only to be told eventually that ‘I knew they were thinking of me, right?’. . . I am tired of the discomfort that surrounds the chronically and terminally ill. I am tired of the abandonment. I am tired of having to lie to people about how I am feeling just so I keep them around.”

Source: “The Silence of the Dying” by the late Sara Douglas

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12 thoughts on “Self-Respect and Friendships: Standing Up for Yourself While Chronically Ill

  1. What a great post, even if I’m coming to this blog a bit late (just discovered it, and thank you!!!!). After 3 1/2 years with ME, Im arriving at this same conclusion myself, about friends. But what do you do if it’s your sisters who are pulling away? My 2 sisters are losing interest in a relationship with me. They are tired of my illness and don’t seem to care anymore. One told me that I’ve had ME so long now, it doesn’t count (as opposed to the brief cancer scare she had). My other sister just acts like I’m fine. We used to be close, but she never calls me anymore and often doesn’t respond to my texts. If it were a friend, Id just let her go (and resent her a little). I am still just letting her go, but it’s hard to be friendly at xmas, etc, when I’m really upset, hurt, and resentful. If I do ever recover, I see this continuing to be a huge issue for our “friendship”. Any advice on how to handle (and be at peace with) this now?

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    1. I have two siblings who both know the severity of my illnesses yet neither are able to form a close bond with me. My first thought is to tell them you’re really not feeling very close to them, and that this makes you sad. Based on their responses you might be able to figure out where to go from there, but it doesn’t do much good to just leave it open-ended without really knowing WHY they’re pulling away–it might not be at all the reasons you think.

      Sometimes we DO know the reasons, though, and at that point all we can do is figure out how we’re going to respond to it. I’ll use some phrases from a woman I deeply respect, Iyanla Vanzant: “You don’t get to tell people how to love you; you get to choose whether or not you want to participate in the way they love. But you’ve got to be loving to them in order to see how they love you back and that gives you the choice.”

      As far as my own siblings, I’ve chosen to accept that I am asking for more than they are capable and/or willing to give me. It is what it is: I’ve tried, they’ve reacted, and now I get to decide in what way I want them in my life.

      Another thing I’ve heard it compared to is expecting people to love you in gallons when all they have are pints. Sometimes we have to meet people where they are, and if that’s not good enough, you must give yourself permission to *lovingly* step back, because it’s not loving to YOURSELF to expect others to give what they’re incapable of giving. It puts you in the place of waiting for them to approve of you, to see in you what they’re not ready or incapable of seeing–their loss!

      I think part of forgiveness comes when we extend compassion for the extremes that led people to behave in unjust ways; this includes forgiving ourselves for the times we’ve misbehaved. I find that however we can treat ourselves, it becomes natural to treat others in the same way, for better or worse. You’ve hurt people without realizing it, you’ve certainly not always known how to respond to radically changing family dynamics, and you certainly did the best with what you had to work with, emotionally–assume other people are the same way.

      Be honest. See people for who they are and not who you want them to be. Know your feelings are valid/Have compassion for the pain it has caused you. And take care of yourself so you don’t have to worry with the people who aren’t able to meet all your emotional needs.

      xo Kit

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      1. Hi Kit, Thanks so much for your thoughtful answer. You have very good advice, and I need to keep reminding myself of it, though sometimes it’s easier said than done (at least for me). I think it’s especially hard right now, because my sisters (and a couple friends) have been my main supports the last few years, and so because of that, and because they’re family, it’s hard to accept that they’re unable/ unwilling to continue. I guess I just need to try harder to accept it and adjust my expectations so that Im not continually disappointed. How do you do that???? Thanks again, so good to be connected to this awesome blog :)

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          1. Thanks, Kit. I think the hard part for me is figuring out how to talk to them about things without it coming out like criticism. Because no matter how much I own my feelings, my feelings are that my sisters have pulled away, that they lack compassion, and that they don’t support me. Which is criticism. Of course, I would try to say this in an “I feel like you’ve been pulling away, I have trouble feeling your support/ compassion” kind of way, but this still sounds like criticism that no one wants to hear and just makes people angry. Then, when the convo inevitably turns to “why do you feel that way, how have I not supported you?” I get forced into giving specific examples (criticisms) of their behavior. Which just pisses them off and further divides us. I’m not saying that 100% it’ll go that way, but maybe 97% given past patterns/ behaviors. So not sure if it’s even worth it, and if so, how to keep it on a relatively positive level… :) Thanks again for your great advice. And please let me know if I’m asking too many questions, I don’t want to be a pain ;) Hugs :)

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            1. What matters is that you speak your truth and do what YOU have to do. Their response is their responsibility and their karma, not yours. It’s also not your job to control the conversation, anyone’s conversation. You only have control over yourself and your response to life.

              There are lessons you agreed to learn in this life, and this is probably part of it–if you don’t, they’ll come around in a different form in order for you to learn them, still. Such is our life class. :)

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  2. Awesome post Kit, totally echo all your wise words here- so eloquently written!! My fabulous co group leader ScorpioJ shared the link to this post over on Chronic Fatigue Syndrome Support Group over on MDJunction- so thrilled she did! As many people as possible need to see this sage snippet!!
    Calm assertiveness is so vital for our self esteem as well as for nurturing our delicate immune system, absolutely right!! Regularly have to do life laundries with friends- oh my gosh yes!
    Warmest wishes to You, namaste Clara :-)

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    1. Thanks Nicole! This one is six years old and written from a different frame of mind than the one I have now, but still applicable to many situations and helpful I think, so I leave it up. Since then I’ve really had to face the things *I* was doing to attract these types of superficial relationships mentioned, so I recently wrote something else along a similar vein. This one here is mostly about finding out you had “friends” that lived on the surface, i.e. people who don’t stick around after a friend becomes ill, whereas the newer one is about setting boundaries with people who make YOU ill (abusive or toxic relationships). But both I think carry a vein of respecting ourselves enough to leave relationships that aren’t working for us. Here’s a link in case you might want to read it. : Trusting Myself to Build Healthy Relationships After Surviving Narcissistic Abuse

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