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.
Worse, many with invisible illnesses frequently encounter people who feel beholden to second guess other people’s health status or dispense dismissive medical advice, despite the fact that they’ve never had a license to practice medicine.
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.
Chronic and invisible illnesses can separate from family members that need to hear our stories.
To counter that, narratives 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.
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.
As you write from the heart, try one of these strategies:
- 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.
- 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.)
- 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.
- 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.
- What kind of onset did your illness have?
- How did your life change as you became symptomatic?
- How hard was the process of having your illness diagnosed?
- Was your case stereotypical or not? How did that impact the diagnosis and treatment?
- Did you have problems finding qualified medical advice?
- Who supported you during that time?
- Who helped with the kids?
- How did you explain changes to your spouse, kids, and other loved ones?
- 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.
- What is your “normal” day?
- What limitations do you face?
- Which limitations are you unable to accept? Perhaps you hope to eliminate some symptoms.
- Have you had to change your vocation?
- Have you had to change your lifestyle, home, or family routines?
- How have you made your peace with your invisible illness or disability?
- Has the illness progressed to visible, i.e., do you sometimes use a cane or wheel chair?
- Have you turned to advocacy?
- What helps you get through?