Tag: relationships

Coping, Friends & Family, Mental Health

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

Kerrie Smyres

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.

Friends & Family, Resources

Romantic Relationships, Marriage & Chronic Illness

Kerrie Smyres

Whether you’re married, living together or dating, chronic illness causes upheaval in any romantic relationship — no matter if it is solid or if it’s a little rocky. In marriages involving a chronic illness, the divorce rate is more that 75 percent (from A Chronic Dose).

I get asked for advice a lot and am always at a loss for what to say. I’ve finally stumbled upon some helpful resources. They all focus on marriage, but some themes are universal.

Keeping Your Marriage Strong
This overview is a good place to start exploring the topic. It addresses many different topics and gives some suggestions for improving your relationship.

How to Survive a Health Crisis or Chronic Illness
An excellent in-depth article covering a swath of issues that couples face. It has concrete, detailed suggestions for keeping your relationship strong.

Marriage and Chronic Illness: A Couple’s Story
One couple’s experience with chronic illness and how it ultimately improved their marriage.

Favorites, Friends & Family

Friends, Family & Illness

Kerrie Smyres

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.

Coping, Resources, Treatment

Sex and Chronic Pain

Kerrie Smyres

Sex is sometimes discussed on headache forums — as in, ha! like I want to have sex when I’m in pain all the time — but it generally goes unmentioned on headache information sites or blogs (including this one). It’s an embarrassing topic for many, but one that should not be ignored.

Pain itself can reduce your desire and so can medications used to treat pain, like antidepressants. People with chronic pain can also have depression, low self-esteem, relationship problems, exhaustion, anger (toward themselves and others), guilt, anxiety — all of which can affect sexual desire. Ironically, having sex releases endorphins that can reduce pain and encourage good sleep.

With lots of googling, I’ve found a plethora of resources on sex and illness. Here are my favorites:

Sexuality and Chronic Pain: The Mayo Clinic touches on issues of sex and chronic pain and gives some ideas for overcoming obstacles. It’s a short overview that’s a good place to start thinking about the topic.

When Sex is a Pain: An accessible, non-clinical article from Wired. It acknowledges the strain that a lack of desire has on relationships and points out that desire is “use it or lose it” — but that your body can re-learn the skill.

Rekindling Desire: Provides practical, realistic ways to increase desire and how partners can work together to reach this goal. It emphasizes the connection between intimacy and desire without being too self-helpy.

Beware the Sex Killers: Antidepressants are known to decrease libido (Wellbutrin/bupropion is is an exception), but other medications can do the same. This Psychology Today article claims that any medication that warns of potential drowsiness can also reduce sexual desire.

Rediscovering Sex After Illness or Trauma: Although cancer is the primary illness addressed, this article stresses the importance of positive self-image and an acceptance that life is not bad, just different, in igniting desire.

Do you know of any other useful information? Share it in the comments or e-mail me.

Coping, Friends & Family

Guilty As Charged

Kerrie Smyres

Hart and I both have colds. He’s sitting on an airplane, going to a trade show, which will be busy, loud and exhausting. I’m sitting on the couch, watching baseball playoff games while perusing cookbooks, crocheting and reading.

I am completely overwhelmed by cooking and cleaning. I can let cleaning slide, but cooking is a necessity. Yet shopping, prepping and cleaning after dinner is just too much for me. (And I haven’t liked either meal service that I’ve tried.) For Hart, leaving work at 6 p.m. calls for celebration.

I’m trying to establish a “workday” routine that allows for all I need and want to do each day without wearing me out. This list is for when Hart is at work, which leaves evenings for spending time together and hobbies (or for me to overtaken by pain):

  • Blogging and returning blog-related e-mail messages — 2 hours
  • Cleaning, running errands, paying bills, grocery shopping and cooking — 2 hours average
  • Exercise, yoga two days a week and walking the other three — 1.5 hours average
  • Amazon sales and eBay (we’re selling a bunch of stuff and books) — 1 hour
  • Writing, either nonfiction health pieces or to try my hand at fiction (which will require lots of studying and practice) — 2 hours minimum

That’s eight and a half hours, which is nothing compared to Hart’s days. But for the sake of my health, I don’t want to exceed six a day.

Can you tell I don’t feel like contributing to our household? After three years, I am (mostly) OK with not earning money. Now I’m focused on making our number of hours of work comparable.

This isn’t about feelings of guilt or inadequacy, but because Hart comes home from most days completely spent. He hits the ground running each day, goes non-stop when he’s at the office, answers e-mail before he goes to bed each night and rarely stops thinking about work.

Hart’s talked about taking a couple years off to go to grad school. He’s also always wanted to start his own business. I want nothing more than to for him to be happy, but… there’s that pesky mortgage and necessary health insurance.

How is it fair that I get to take count practicing yoga as part of my work? Or take time off for lunch and a pedicure? Or read when I get tired?

I’m forever questioning the severity of my pain and [insert other migraine symptom(s) here]. I should be able to get more done in a day than I do, shouldn’t I? Am I just hiding behind the statistics on the impact of headache on quality of life?

Where’s the balance? Is it even possible to achieve one?