Negative Thoughts, Part Two: If Only I Worked Harder…

There’s a common wisdom that illness can be overcome through hard work. Work is definitely involved, but effort isn’t the only factor. I know this, just as I know I’m not lazy or faking it. I also know I work really hard to improve my health. Still there’s a nagging thought: I must not be getting better because I’m not dedicated enough.

To reassure myself, I looked at the review of my 2007 treatments and treatments I planned for 2008. The lists are so long I tire remembering all appointments I’ve been to. This should be proof that I’m trying to get better. Too bad my inner perfectionist tells me I should be able to do more, no matter what the project.

During my (mild) meltdown last night, Hart asked how he could help. I asked him to tell me that I do work hard at getting better. He looked so pained when he told me I work as hard as I possibly can. Having him say that was so reassuring. If he thinks I’m trying hard enough, I must be.

I wish I didn’t need outside confirmation for things like this. Ha! That sentence makes me laugh. Of course I’m too stubborn and independent to ask for help. Of course I want to do it all on my own. I simply can’t — none of us can. Maybe I’ll remember that for a few days at least.

And maybe I’ll remember I’m working my butt off to get better.

Invisible Illness: Strength Through the Struggle

Guest Post by How to Cope With Pain Blogger

The writer of this post blogs anonymously as she is a practicing psychiatrist. Her practice focuses mostly on patients with chronic pain. Having chronic pain herself, her practice and blog reflect a deep understanding of its challenges. –Kerrie

As we all know, there are many challenges and difficulties when living with an invisible illness. However, the experience can also allow wonderful attributes such as patience, strength, humility, trust and perseverance to flourish. Encouraging these virtues –- also invisible– to grow within us is a way to take advantage of adversity

Patience is needed to wait for healing, to respect your own and others’ limitations, and to learn to live with chronic illness.

Strength is needed to carry the burden of illness, to be stoic for others when necessary, and to stand up for yourself.


Illness can teach us humility, that we have limits, that we do get sick, and that we need to learn to ask for help.

Illness can teach us trust, trusting others, trusting ourselves, and trusting in our spiritual beliefs.

Perseverance is needed to stick with treatments, to tolerate pain, and to live fully despite illness.


Thanks to Simon Davison (patience) and Lollie-Pop (strength) for the photographs at Flickr.

“Overcoming Self-Defeating Behaviors When You’re Chronically Ill”: Presentation by the ChronicBabe Editrix Today

Check out ChronicBabe Editrix Jenni Prokopy’s National Invisible Chronic Illness Awareness Week presentation at 3 p.m. Eastern time this afternoon — and call with your questions. You can listen online or call in. The presentation will be archived in case you miss the live event.

The details from ChronicBabe:

national invisible illness awareness week Here’s the scoop: To hear my presentation tomorrow, starting at 2pm Central time, you can either use the Blog Talk Radio player to log in and listen (there’s nothing to download) or you can simply call (347) 202-0072 and hear me speak about “Overcoming Self-Defeating Behaviors When You Are Chronically Ill.”

Yea, I know, the title sounds kind of dull. But my presentation will be anything but. You’ll hear me talk about strategies I’ve used to kick my own rear end into gear when I’m feeling down, and you’ll leave with tons of advice you can start using immediately to boost your outlook, productivity and spirit! And at the end of the presentation, you can call in with questions and I will happily answer as many as we can cram in to the hour. (Use the same phone number listed above to call with questions.)

Before you listen in, start by reading these instructions for conference attendees which explain how Blog Talk Radio works. Then check out the speaker list to see who else you want to hear. (Please note: there are different phone numbers for each speaker!) There are more conference listening tips here and links to the live shows as they are presented.

National Invisible Chronic Illness Awareness Week

In addition to living with the symptoms of headache disorders or migraine, having an illness others can’t see can be extraordinarily frustrating. Rest Ministries is raising awareness of life with invisible illness this week during National Invisible Chronic Illness Awareness Week. Check out the following press release for information on the week.

Nearly 1 in 2 people in the USA have a chronic illness and according to U.S. Census Bureau about 96% of illnesses are invisible. So it comes as no surprise that with hundreds of thousands of people on the Internet searching for health support and information, thousands of people now post daily blogs about the emotional trials they experience while facing chronic pain on a regular basis.

National Invisible Chronic Illness Awareness Week is being held September 8-14, 2008. Part of their outreach includes over thirty days of guest bloggers as well as bloggers all over the web posting about invisible illness issues. For example, what happens when someone with an invisible illness parks in the handicapped spot, even though they are doing so legally?

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”

Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.” She has blogged about her illness since 2006 and says, “When you are a young adult, people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”

If you would like to participate in this unique chance to blog for awareness and increase an understanding about invisible illnesses, visit www.invisibleillness.wordpress.com. You can receive updates, participate in surveys, win prizes, and learn more about the telephone workshops at the Invisible Illness Week website.

Balance is Overrated: Choosing Fun Despite Knowing Vengeful Migraine Imminent

teeter totter signI mentioned to a friend who has migraine how tempting it is to overindulge whenever I feel OK. I say I won’t but always do it anyway. Her perspective? Go ahead and push it during a good period. The migraine will return sometime whether you take it easy or not. There’s no reason to hold back.

She gave me that was brilliant advice while we were at Green Lake yesterday. We did the 2.8 mile walk after coffee and before a late lunch. Five hours flew by and we both enjoyed every minute of it. We parted knowing that each of us would spend the rest of yesterday and probably today on the couch. And neither of us cared.

I gave myself permission to enjoy feeling good, no matter what the “consequences” were. I feel horrible today, but yesterday was excellent. I’m not berating myself for choosing to enjoy my day. Knowing it was my choice somehow makes it better. Now I’m going back to the couch.

Related posts:

photo credit: navonod

Looking Beyond Illness: Adding Up the Smallest Joys

A few smiles a day can make a big difference in how we perceive pain — and our lives. This occurred to me today as I bought Spike Lee water. (That’s sparkling water to anyone outside my household.)

I was taken aback when my then six-year-old niece asked me for her Spike Lee shirt a few years ago. My sister translated: spikelee means sparkly. I was so amused that the phrase became a fixture of my vocabulary. “Give me sharp knife,” said in a serious and clipped tone, is another favorite from when my nephew was three.

I drink sparkling water and use sharp knives every day. And I remember these funny stories. I also think of the kids I love so much and who make me laugh, intentionally or not. These inside jokes aren’t that funny to anyone else, but they mean the world to me.

Remembrances are only part of the picture. Consciously thinking about the happiness in every day may be the best way to revive joy. I know a woman with bipolar disorder and migraine who writes down the good parts of each day before she goes to bed at night. This reminds her regularly how rich her life is despite illness.

As the migraine that’s been coming and going since Thursday threatened to consume me, I struggled to see the positive aspects of today. Let’s see, I was only 10 minutes late to my appointment this morning, biofeedback kept my migraine at bay long enough to go grocery shopping, I made myself laugh by deciding our house really needs a periscope.

So many cliches say to enjoy the little things in life. A good sentiment — one that can seem impossible to put into practice. The items on my list of what’s good today border on minutia. Had I not seriously thought about and recorded them, any happiness would be lost in a day dominated by pain and exhaustion.

Now, as the pain grows more assertive, I’m grateful knowing I did something more than have a migraine today. I was productive and laughed aloud. These nearly forgotten pieces of each day come together, creating a quilt to wrap around myself when I most need reassurance that my life is beautiful and fulfilling.

Making Peace With Pain: Accepting Migraine and Chronic Daily Headache in My Life

Accepting that I may have a migraine or headache every day for the rest of my life is the most effective treatment I’ve had. But how did I get here and what does acceptance mean, exactly? Time. I know, not an encouraging answer, but where I am now is worth all the time it took to get here.

After my occipital nerve stimulator proved ineffective in January 2004, I was devastated. What I thought was my last chance at treatment had failed. Feeling like you have nothing left can suck you into a dark hole. It can also be the motivation necessary to claw back to an enjoyable life even if chronic daily headache and migraine are going to stick around. Most likely, it will be both.

For more than a year, I wrapped myself in the sadness and hopelessness that enveloped me. Mourning losses from my illness was necessary, but I wanted my life back. Even one full of pain and exhaustion was preferable to where I’d sunk. I was finally motivated to find a happier way to be.

Reading The Anatomy of Hope by Dr. Jerome Groopman played a crucial role. He writes: “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

Until then hope was believing I’d find a miracle treatment. Groopman taught me that hope is knowing a happy life is possible even with illness. Finding the joy in everyday life is far better than clinging to desperate desire for a magic cure.

Instant change didn’t follow my aha! moment, but put the process in gear. Now I have days where the thought “I love my life” jumps unbidden in my mind. That never would have happened four years ago. I still have plenty of days that are horrible, but hope lurks even on days I don’t think I can handle it anymore. When I feel OK, I really do try to seize the moment, as the cliche goes. Corny yet true.

The following books have helped me along:

  • The Anatomy of Hope by Jerome Groopman – The first time I read this, it was just an interesting collection of essays; the second time I “got it” and took the messages to heart. That was when I was first beginning to accept headaches as a permanent part of my life.
  • All in My Head by Paula Kamen – A memoir and great information source on chronic daily headache. She recommends Chronic Illness and the Twelve Steps by Martha Cleveland for accepting illness. (Kamen is also a contributor to the New York Times’ migraine blog.)
  • The Chronic Illness Workbook by Patricia Fennell – The same idea as the 12 steps book, but with less of a spiritual focus and is more methodical (for lack of a better word). I prefer this one.
  • Kitchen Table Wisdom by Rachel Naomi Remen – In the self-help/inspiration genre without being over the top pushy or mushy. The thoughts it provokes have been vital to my acceptance of illness. My copy currently has 14 bookmarks in it.