Friends, Family & Illness

The canceled plans, dirty kitchens and general grumpiness that go along with having headaches, whether episodic or chronic, puts strain on even the best of relationships. With all my experience, you’d think I’d have some suggestions for dealing with this, but my brilliant strategy is to feel guilty. Not too productive, I know.

The new blog How to Cope With Pain highlights “family issues” once a week. Last week’s post answered questions that family members might have, like “Is the pain real?” Here’s part of her response:

“Faking pain, on purpose, to get out of something or to get a reward is known as malingering. While it does occur, it’s rare. Most patients feel very guilty about not being able to do the things they used to do, whether working at a job or taking care of their family around the house. Very few patients with pain make more money out of work than working.”

On her blog, migraineur Nicole offers tips for friends of chronics, including: “[P]lease do not decide for us what we can and cannot do. If you are having a party, let us know. Let us decide if we can or can’t make it to the party, movie, or what have you.”

This anonymous letter to people without chronic pain begins with, “These are the things that I would like you to understand about me before you judge me.” It goes on to explain what many chronics wish their loved ones understood.

If your friends are wondering what they can do, direct them to 50 Ways to Encourage a Chronically Ill Friend. Many ideas focus on encouraging the sick person talk about things that most people don’t want to hear about, like the massive changes that illness has brought to their lives. [via ChronicBabe]

What I fight with the most is being honest. It’s much easier to say that everything is OK than to admit that it’s not. When I do have the courage to tell people how I really feel, I worry that I complain too much.

I’ve finally accepted that my friends and family understand the best that they can. I’ve lost a lot of friends along the way. Although hard at the time, I’m better off for it. I don’t have the energy to convince other people that I feel terrible or deal with their insecurities when I cancel or don’t call them.

Because of my illness, my faults are in plain view. It’s simply too hard to hide that I’m selfish with my time, can be terribly insecure about the most bizarre things, and have great intentions with little follow-through. My friends and family accept me for what I can give now — which may be different than I gave three years ago or will give two months from now.

That’s the beauty of love.

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7 Responses to “Friends, Family & Illness”

  1. Jen Says:

    “What I fight with the most is being honest. It’s much easier to say that everything is OK than to admit that it’s not. When I do have the courage to tell people how I really feel, I worry that I complain too much.”

    Yes! If I actually talk about how I’m feeling, I’m worried that I sound like a chronic complainer. It’s one thing to not feel well once in a while – people know how to respond to that. But on a daily or weekly basis? Some people aren’t sure how to take that sort of thing.

    *********
    It’s even hard to figure out with people who _do_ know how to take that sort of thing!

    Take care.

    Kerrie

  2. deborah Says:

    Wow, so feeling this blog today! Three un-folded loads of laundry still await me in my living room. along with the dust bunnies, pulled drapes, dirty bathrooms, floors that are over-do for vacumming and sweeping, dare I say (cleaning)!! And really, I would just love to take a Zofran and go back to bed right now.

    ********
    Sorry it’s a bad day and you have so much to do. I know it’s hard to do, but try not to push yourself. I did yesterday and am regretting it.

    Take care.

    Kerrie

  3. Audra Says:

    Excellent post! As I’ve said before, it’s nice to come here and know that I’m not alone.

    ********
    Thanks! I hope you’re doing OK these days.

    Kerrie

  4. Vicki Says:

    Boy, this website is really a god-send. This past coupleof weeks have been really rough…kind of like a barroom brawl where, as soon as you stagger to your feet after getting knocked down, you get knocked down again!

    I have been searching for answers for 17 years…the list of treatments and meds (both conventional and alternative) is huge. I continue to search for help; but when I can’t get much respite and spend the majority of my time in a dark room with ice packs and meditation, my spirits really sink. Right now I’m feeling pretty discouraged and can’t imagine how I can face a whole lifetime of this.

    My doctor is now going to do an occipital nerve block in hopes that I will get some relief. I’ve tried to learn as much as possible about this, but haven’t had a lot of success. Does anyone know what the side affects are, and the risks/benefits of long-term, periodic treatment like this?

    I try not to talk about the headaches; they bore me, so they must bore other people. The comments of others on this website are SO helpful. Another (mminor) problem I have is a friend who I had to cancel a lunch date who is now irritated with me. I’ve thought several times about calling her, but realize I don’t have the energy to do it, and keep reminding myself that it’s HER issue, not really mine. I just can’t feel any more guilty. I have to fight it all the way.

    Luckily, I have some very good, headache free days that reassure me that I’m
    * not lazy
    * not trying to be manipulative by being sick
    * not trying to garner attention in a negative way
    etc.

    I’m also very fortunate to have a supportive family. While I wish I’d get a little more help with stuff around the house, I also have to realize that they have their own, very full lives with lots of demands and they don’t exist just to keep my propped up. Sometimes it’s hard not to get too self-centered.

    I will continue to watch this post, and any advice about nerve bllocks or any other of the more invasive procedures will be welcomed. As well as any information about long-term affects of using triptans. (I use about 12-20 per month.)

    *********
    I’m sorry you’re suffering so much. I hope that this bad spell eases up soon. It sounds like you’ve got a great attitude about all this. That helps a lot, but don’t keep yourself from breaking down and grieving too. Headaches really suck and getting angy about them can help release their hold on your life.

    I don’t know much about occipital nerve blocks, but I know that triptans can cause a rebound effect (often called a medication overuse headache, or MOH). Here’s a previous post on them: http://www.thedailyheadache.com/2005/06/rebound_headach.html

    The Migrainepage forums are a good place for information on nerve blocks. The people there are kind and supportive and I know that some people have had them. You can search the archives for previous discussions on the topic and/or ask questions of your own.

    Take care of yourself.

    Kerrie

  5. Carma Says:

    Kerrie,

    Thanks so much for your blog. I really needed to see that there are others out there like me. I really have no support system. I live 100’s of miles away from my family. My husband is great but none of my friends have really “got” it. They generally will say, you look fine (I recently realized the botox really does mask the pain on my face)or It’s tough looking after twins or 3 kids. Try doing it with your head exploding, dizzy and nauseated! It can be so infuriating and disheartening. On Sunday my neighbors all gathered out on the street to come down on me about my yard. It was so embarrassing and I was so angry. I just can’t manage it all. If they don’t like it why can’t they have some compassion and help? Sometimes I just want to crawl in a hole. Thanks for being there!
    Please keep your blog going Kerrie, it is fabulous for all of us who need a word of encouragement.

    ********
    Thanks for the kind words. I’m so sorry you’re suffering so much. And that your neighbors took were so awful about your yard. “I can’t manage it all” is such a familiar thought to me.

    Take care of yourself (and I’ll see you tomorrow!).

    Kerrie

  6. benh Says:

    Kerrie, I would like to echo everyones thanks for this post and this blog. I am the boyfriend of one of your many fans. Thru this blog I am learning to be a better support for her and I would like to thank you for that.

    Wishing many good days to everyone.


    benh~

    *********
    You made my day. Thanks.

    Kerrie

  7. anonymous Says:

    Hi. I’m fifteen, and I started having headaches this summer. they’ve just gotten worse, and longer. I started taking Aleve, and I used the whole bottle in only a week. So I started on Midol (it was all we had!) and then found out I could get two caplets of excedrin for only 69 cents.

    But now I’m not even sure if I’m still having headaches, or withdrawal symptoms from not having the pain relievers. I’ve been waking up every night at 2 AM and not getting back to sleep until 3. In addition to this, when I get the headaches I feel really angry and irritable, and end up being very snappy at my boyfriend for the smallest things, and then his feelings get hurt. Last year, after seven years, I told on one of our family friends for molesting me, and I’ve finally stopped hurting myself. But my family believes that I’m just trying to get attention, so everyone else is pretty much done with me except for him. And I can’t lose him.

    I was really relieved to find this site, and thought you might be able to give me some advice. Sorry this is so long.


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