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Guilt: How Do Family & Friends Really Feel About Sick Loved Ones?

We feel guilty because our partners, parents, kids or friends take care of us when we’re sick. Not only that, they have to pick up the slack of the of chores, errands and responsibilities that we couldn’t take care of.

We feel guilty because we call in sick to work, cancel plans with friends, sleep too much, tell everyone around us to be quiet, have dust bunnies under our beds and in the corners and even in the middle of the dining room table.

We feel guilty because we don’t go to our kids’ soccer games, return phone calls, stop to chat with neighbors, enjoy the sunshine/snow/rain, take the dog for a walk, cook dinner.

I wrote that last September and was overwhelmed by the responses from people who also feel guilty for letting friends, families and coworkers down. Lots of us obsess about this, but have you ever asked them if they truly feel let down? I haven’t.

The teacher of my meditation class told stories of previous class members who were wracked with guilt and worried that their families and friends were disappointed in them. Actually asking the families and friends revealed an entirely different truth: They did not feel let down, but were sad to see their loved ones suffering. They all felt helpless and wished they could do more for the person with illness.

So the guilt is on both sides. If only we could figure out how to meet each other in the middle. Have you asked your loved ones what your illness is like for them? Let us know in a comment on this post or on the online support group and forum.

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An Update on My Dad & How I’m Doing

My dad came home from the hospital Friday and is doing well. He’s having trouble with atrial fibrillation, which shortens his breath and tires him out. This morning my mom went with him to see his cardiologist and came home with new medications. He’ll take them for a couple weeks then have a follow-up appointment.

My sister arrived Saturday and we’re all having a lot of fun. We haven’t been together as just the four of us in years. I am blessed with a wonderful family. We love each other deeply and laugh nearly constantly.

I’ve felt pretty good the last week. Reglan is getting me through the daytime nausea. I’m taking Valium for it at night and have woken up every morning ready to go. I’ve never tried Valium for my headaches before, but it seems to be helping them too. Maybe it’s the quality of sleep or level of relaxation.

Most important is that I’ve listened to my body. Instead of pushing myself until I fall over the edge, I meditate as soon as I notice signs of an impending meltdown. I have so much to tell you about what I’ve learned from meditation and how helpful it has become — much more than I ever expected. I need to get back to my family now, but will share with you as soon as I can.

Thanks again for your love and support. Knowing you’re pulling for my family and me is so comforting.

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Helping Others Understand: A Letter to People Without Chronic Pain

Wish that your friends, family and coworkers had a better idea of what you’re going through? This anonymous letter has circulated on forums and by e-mail for a few years, but is always worth repeating.

Letter to people without chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

Someone asked if I thought it was appropriate to share the letter with her family and boss. Will it backfire if the recipients haven’t shown an interest in understanding your pain?

photo credit: desi.italy

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Chronic Pain’s Impact on Families

Not helping around the house, canceling plans, burdening loved ones. … Guilt may be the most frequently recurring topic on The Daily Headache. For both readers and me, the guilt nearly always revolves around letting other people down.

The impact of chronic pain — or any other chronic illness — on our family and friends is undeniable. Episodic migraines or other disabling headaches also affect relationships significantly.

So you’d think there would be a wealth of information about helping families and loved ones cope with your illness. Not so much. Fortunately, New York Times columnist Jane Brody explores the topic in Chronic Pain: A Burden Often Shared. She writes:

Healthy family members are often overworked from assuming the duties of the person in pain. They have little time and energy for friends and other diversions, and they may fret over how to make ends meet when expenses rise and family incomes shrink.

It is easy to see how tempers can flare at the slightest provocation. The combination of unrelieved suffering on the one hand and constant stress and fatigue on the other can be highly volatile, even among the most loving couples — whose burdens are often worsened by a decline of intimacy.

The American Chronic Pain Association‘s Family Manual, which Brody references in the article, is $25. I also recommend Chronic Pain and the Family. The websites for the Well Spouse Association and the National Family Caregivers Association are also helpful. I also provide resources in Friends, Family & Illness.

[via In Sickness In Health]

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Guilt Comorbid With Headaches

“Comorbidity refers to the greater than coincidental association of separate conditions in the same individuals. Historically, a number of conditions have been noted to be comorbid with migraine, notably psychiatric disorders (anxiety, depression, panic disorder), epilepsy, asthma, and some congenital heart defects.”

This quote is from an abstract of an article from the June 2005 issue of Current Opinions in Neurology. A comorbidity never included on the list is guilt. OK, so guilt isn’t exactly a illness, but you have to admit there is a “greater than coincidental association” of guilt in people with headache.

We feel guilty because we think we’ve done something to contribute to the pain. Maybe it was getting too worked up over that deadline, eating a trigger food, staying up too late with friends, not drinking enough water, oversleeping. We lie in pain, berating ourselves for whatever we did that caused this headache.

We feel guilty because our partners, parents, kids or friends take care of us when we’re sick. Not only that, they have to pick up the slack of the of chores, errands and responsibilities that we couldn’t take care of.

We feel guilty because we call in sick to work, cancel plans with friends, sleep too much, tell everyone around us to be quiet, have dust bunnies under our beds and in the corners and even in the middle of the dining room table.

We feel guilty because we don’t go to our kids’ soccer games, return phone calls, stop to chat with neighbors, enjoy the sunshine/snow/rain, take the dog for a walk, cook dinner.

While our heads pound, we rage against ourselves for demanding to be the center of attention, not doing our duties, spoiling plans, being unsociable. Our guilt entraps us not just because we let other people down, but because we let ourselves down. Every day. We know we could do more or be better or care for others if we weren’t so weak or lazy or crazy.

We tell ourselves this isn’t true. We may even know it academically. But it’s hard to believe when we’re laid up, cooped up, fed up.

Paul of A ClusterHead’s Life is intimate with guilt these days.