Jul 082016
 
Invisible illnesses and daily pills

Chronic and invisible illnesses can separate from family members that need to hear our stories

If you’re like me, chronic and invisible illnesses come towards the bottom of the list of things you’d like to write about yourself. It’s not just immersing yourself in the negativity. Although the term “invisible illness” applies “to any medical condition that is not outwardly visible to others,” according to Social Work Today, some illnesses (heart disease, cancer) seem to generate support from loved ones, while others leave sufferers socially isolated.

Many with invisible illnesses frequently encounter people who, although they’ve never had a license to practice medicine feel beholden to second guess other people’s health status or dispense dismissive medical advice.

I wish Scary Mommy (Christine Organ) would write a post to put a stop to the shaming that people with chronic and invisible illnesses face, like she did with Put Down Your Pitchforks and Cut Moms Some Slack.
I’m happy to see courageous stories starting to pepper the blogosphere, in spite of society’s wont to Monday morning quarterback. Sites like YouDontLookSick.com are giving voices to those who feel isolated.

Why Stories of Invisible Illnesses Are Important to Tell.

Stories of struggles and resilience inspire and promote understanding. Unfortunately, those stories don’t always end with a change of fortune. A Job-esque restoration of wealth and family wholeness, or some other version of happily-ever-after. Or a cure.

Neither is that necessarily the message that loved ones need to hear.

Resilience isn’t about waiting for the tide to turn. It’s about learning to swim in turbulent water, or reconciling yourself to staying on the shore. A 15-year-old in my life recently advised a friend who is struggling with depression. “I don’t think this is something you can make go away. But, I think it is something you can learn to live with.” That’s what our stories can illustrate.

Explain your illness.

Writing about invisible illnesses

Writing about invisible illnesses, though hard, can promote understanding.

If you’re thinking, “I shouldn’t have to,” I’m with you. At least partly. On the other hand, , you may also want to promote understanding. Write from the heart or try one of these strategies:

  1. Quote from reputable sources. The medical community’s debates over a disease’s diagnosis and treatment can  undermine patient support. Have there been new studies? Protocols? Perhaps you can borrow a quote from National Institutes of Health or John Hopkins—an institution that even Aunt Betty will believe in.
  2. Get help from an advocacy group. Most people aren’t trying to be complete jerks. If there is literature that explains how family members can be supportive, share it. (If you quote an excerpt, reference back to the original so people can read the complete article.)
  3. Write a third person account and provide an outside perspective. Especially if you feel family members have made up their minds without facts, someone else’s situation may open their eyes.
  4. Rather than educate loved ones on invisible illnesses, help them understand the symptoms you experience. What no-see-ums do you face daily, such as joint pain, shortness of breath, lack of energy?

Explain what’s so hurtful about the folks that don’t get it.

Back when I was at my worst with chronic Lyme disease, I wanted to wear my positive Western Blot like a crest on a soccer uniform, and my doctors’ resumes around my neck.

The questions people would ask would just increase my emotional distress.

“Are you sure it’s not something simple, like lack of sleep?”  Are you sure you’re not suffering from something simple like NO tact and NO brains?

“Maybe if you went out more, you’d get your mind off of it. . .” Let’s see, if I could walk 100 yards or string five words together in a sentence I might be able to go out for an evening. Obviously, I’m just staying in ‘cause I love single person pity-parties..

“A PICC line seems a little drastic. . .”   Thank you. I graduated summa cum laude with a triple major, but I’m incapable of processing my doctor’s advice. Good thing that you, almost total stranger, are here to help me through.

Of course, I never said those italicized things. Most of the time, I’d mumble something inane. It wasn’t simply that brain fog made me too inarticulate to debate. I didn’t see the reason I needed to.

It’s a pity ASweetLife.org’s handy dandy email-able 15 Things Not to Say to Someone with a Chronic or Invisible Illness wasn’t around back then. Every one of those things hits the nail on the head, and they explain why those questions are things are counter-productive, if not down-right insulting, while putting the snarkiness on hold.  Aside: Personally, I’d add a #16.  If you’re tempted to begin a sentence with “I don’t mean any offense, but…” don’t say that sentence.

Let loved ones know how they can be supportive and helpful.  What do you need? What makes it harder for you?

Tell the story of how you coped.

Stories are more powerful than facts. Anyone can debate the facts of an invisible illness, but no one can deny your story.

  1. What kind of onset did your illness have?
  2. How did your life change as you became symptomatic?
  3. How hard was the process of having your illness diagnosed?
  4. Was your case stereotypical or not? How did that impact the diagnosis and treatment?
  5. Did you have problems finding qualified medical advice?
  6. Who supported you during that time?
  7. Who helped with the kids?
  8. How did you explain changes to your spouse, kids, and other loved ones?
  9. Is this something that other family members will likely inherit?

Explain your new normal

When the rheumatologist I saw, diagnosed Fibromyalgia, he handed me a little tri-fold brochure on ‘Coping.’ A little bullet point recommended changing vocation or career path.  Simple huh? Not.  Explain why as you tell your story.

  1. What is your “normal” day?
  2. What limitations do you face?
  3. What limitations are you unable to accept?
  4. Have you had to change your vocation?
  5. Have you had to change your lifestyle, home, or family routines?
  6. How have you made your peace with your invisible illness or disability?
  7. Has the illness progressed to visible, i.e., do you sometimes use a cane or wheel chair?
  8. Have you turned to advocacy?
  9. What helps you get through?

Your Turn:

Have you told your story of coping with chronic or invisible illness? How did it go over? What would you recommend?

May 272016
 
What else have you lost quote by Havelock Ellis

What else have you lost? How did that loss teach the fine art of living?

Grief often rears its dark, draining head, not just when someone dies.  The onset of many life crises is the loss of something. A relationship, a value, a sense of purpose.  We’ve all experienced a loss of a pet or cherished object (See Writing Your Lost and Found Story.) But what else have you lost during your lifetime?

Loss of a Relationship, Sense of Identity

A loss of a relationship can also entail a loss of an identity. Our worldview changes when life chooses to make an illegal U-turn.

Recently, a friend of mine when through a time of anguish that makes me feel neurotic grieving over my perfectly normal empty nest. Her 20-year-old daughter disappeared from a rehab facility in a major city many hours away from home. For two eternally long months, there was no sign of her child.

Finally, by chance, driving along a major thoroughfare in her own city, she spotted her daughter. The reunion was also a moment of heartbreak. My friend has a hard time talking about it. Though she temporarily located her daughter, my friend’s world had shifted on its axis. In addition to missing her daughter’s physical presence in her home—in her life, the shroud of adulthood that her daughter now possesses limits her ability to help her child who suffers from mental illness and addiction.

When have you had to make peace with a new version of “normal”? A divorce, job loss, or career change can also spark feeling of a loss of identity. How did you right yourself? How did you regain your sense of self? These make great stories, stories with the power to connect across generations.

Innocence Lost

Another friend tells of her pre-teen loss of innocence. The Oakland County child killer and the panic he instilled in the entire Detroit metro area robbed her and her friends of carefree afternoons, riding bikes to each other’s houses. Of going out to play out from under the anxious, watchful eyes of their parents. The bubble of invincibility that buffets children against the horrors of the adult world popped. In its place came an imagination that ran rampant. It colored not only her own development, but the eventual choices she would make as a parent.

Loss of Physical Ability, Memory

There are things that our mortal, frailer-than-we’d-like-to-admit bodies cheat us out of as well. They betray our still active minds by refusing to work, or at least work as well as we’d like. They force us to fight disease instead of those life battles we want to mount.

Perhaps you’ve had to bear helpless witness as a particularly cruel disease causes a family member to misplace memories, even their sanity. Past moments, even the recognition of loved ones, fade into oblivion. Consider writing about these moments of heartache; they tell stories of love and devotion.

What else have you lost?

Along the road, whether by virtue of physical maladies or of the life sh** that happens, we lose things. Intangible things. Confidence. Independence. Hope. Faith. Courage. Our groove.

Don’t you think these moments are important to share? What would you want your loved ones, especially those of future generations, to take away from your story? Of course, they’ll be touched by your loss, but they can also learn from your healing or your renewed perspective. Perhaps they’ll even discover that resilience isn’t inborn, but something that can be gathered along the way, even on the roughest, dirtiest roads.

Havelock Ellis is quoted as saying, “All the art of living lies in a fine mingling of letting go and holding on.” Let your loved ones know how you did that.

Apr 142016
 

Bumper sticker covered car

Do you have something to say about yourself? Image by RHoch (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

How do you tell people who you are? How would you give them a bumper sticker synopsis of yourself? (Of course, you could ask why you’d want to do that as well. As Rob Walker argues, “…bumper stickers are about declaration, not dialogue.” But let’s put that aside and indulge in the exercise. Consider it a brainstorming activity.)

What Would your Bumper Sticker say?

If you could tell the world who you are in just a few words, what would you say? If you were forced to have a bumper sticker—even if you’re anti-bumper sticker like me– what would you put on it? Continue reading »

Oct 132015
 
Old photos help form emotional connections to family members

Forming emotional connections to family members you can’t remember becomes easier when you view their lives as a narrative.

Are you able to form emotional connections with family members you don’t remember? With ancestors? Or are they stubbornly one-dimensional, lying flat on the page?

Even when you have the basic facts of your relatives’ or ancestors’ lives, emotional connections to them often remain elusive. If you never knew them—have no memories of them—they are simply names, dates, and random facts.

Form Emotional Connections to Family Members via Empathy and Imagination

Luckily, we already have the tools we need to bond with these family members. They are the same tools that allow us to connect with anyone else: empathy and imagination. Continue reading »

Jul 092015
 
Cousin once removed by way of staple remover on family tree.

A cousin once removed isn’t what (or who) it sounds like it is.

Why was my cousin once removed? Maybe that’s why my family dispensed with the first cousin, second cousin, and once removed nomenclature when referring to cousins: They knew I’d ask a bunch of questions, most of which would begin with “Why…” Cousins were just “cousins.”

“Once removed” doesn’t sound anything like it means. Unlike its general use in the English vernacular, when it’s used to describe family relationships, removed simply means from a different generation. I now think of it as “more distant in age.” A first cousin once removed might be a first cousin of my parents’ generation or my children’s generation. (See Genealogy.com’s primer.) Continue reading »

Dec 012014
 
Tethered to the past

Tethered to the past: the ropes can keep us safe or tie us in knots

Tethers or connections? The past is an integral part of our future. When we write memoirs, memories, or histories that create a positive connection with the past, it grounds us. When the past colors our existence to the point that the present and future are drained of reason, it’s a tether to be broken–or at least loosened up a bit.

How are You Tethered to the Past?

There’s an apt German expressions for those times when you are torn about an event: “One eye laughs; the other cries.” Continue reading »

Oct 202014
 
writing about personal facades and the secret centers

Writing about personal facades can give loved ones a taste of your “secret center.”

Writing about personal facades is a great way to connect with loved ones. Plus, it can be therapeutic.

When I lived in Europe and tromped around medieval cities, I marveled at the intact buildings. Buildings remained as beautiful in the 1980s as they had in the 1510s. Yet modern businesses and households were operating out of them. Their trick? Extensive renovations that didn’t touch the street side facade. The buildings themselves were nothing like the original structures, but through the centuries, the historic fronts were maintained.

Large or small, good or bad, we all have them. What’s your facade? How does it function in your world? Such introspective topics aren’t just good things to discuss with your best friend or therapist (assuming those are two distinct individuals). Your legacy of yourself and your past doesn’t have to be limited to narratives. Continue reading »

Oct 102014
 
Aiming and putting down roots

Putting down roots isn’t a random decision.

The place we choose to settle and put down roots has far reaching (no pun intended) consequences. It’s the community our children call home. It’s the environment in which they form their worldviews. Frequently, it becomes the place children and grandchildren choose to start putting down roots. In other words, it’s something that will matter to future generations. But it’s often a story left untold—especially when it comes to our ancestors. Continue reading »

Jun 302014
 

Various Roots Roots by Another Mother…

When we think of roots, we think of family trees. If we’re from a loving, supportive family, we think of those roots supplying stability and nourishment. If we’re from an atypical—or even dysfunctional—family, we think of them as hidden, dirty, cavorting with worms and grubs.

Those roots are great to write about. But, we have other roots. Some of them have nothing to do with family. Bear with me as I beat the metaphor a little longer. Continue reading »

Jun 052014
 
Things you might not know about me

One of the things you might now know about me is that I love being a soccer mom.

I’m preparing an informal workshop for my launch party tomorrow. It’s a fun version of “Things you might not know about me.” It belatedly occurred to me that it might make a good blog post.

Things that Everyone Should Know About Me

I’m not much of a mystery woman. I wear my heart on my sleeve. But, because I tend to start my paragraphs in the middle—even in conversations—it would be helpful for people to know so basic things about me. Continue reading »