I see more than ever the need for kindness and compassion in the world.
“Invisible” diseases are the worst. The ones that allow you to basically function through the day, yet haunt and torture you in silence, forcing every move to be sickly debilitating. My disease happens to be something called Hailey-Hailey disease (or HHD). Never heard of it? Yeah, neither have most people.
In a nutshell, HHD is a rare genetic disorder in which skin cells refuse to stick together, resulting in a breakdown of affected skin cells. In plain terms, the skin begins to itch for a while, just a normal itch, and then picks up momentum to a burning itch that never goes away. The itch wakes you up at night and literally makes your skin crawl.
Next, and this is the really fun part, the skin blisters, splits and usually gets infected. All the while itching and burning like a hot knife in your skin – 24/7.
HHD likes to reside in the armpits, behind the knees, under the breasts and in the groin area. I’m blessed to only have flareups in my armpits. If you dare, Google search Hailey-Hailey disease + groin and see why I say I’m fortunate to only have this disease under my arms.
The point is – as I’m crawling out of my skin and next to tears because of the pain – nobody knows because all that mess is covered up and I don’t “appear” to have any problems. Compounding it, my chronic pain takes over life and easily segues into anxiety.
I reasoned that if I am soldiering through this horror, all with a smile on my face, makeup applied and sporting a cute outfit, certainly others are suffering as well.
A simple “all call” on Facebook brought not only solidarity for those with chronic pain, but an empathetic sadness for the individuals who live in agony on a daily basis.
I asked three simple questions in regard to how chronic pain affects life, relationships and mental health, and the response was eye-opening.
Stephanie, a communications coordinator for a private elementary and middle school in the Chicago suburbs, says the chronic pain from her stage-four endometriosis is exhausting on many levels:
“It’s exhausting being blown off by medical professionals. It’s exhausting having to explain yet again why I can’t (fill in the blank). It’s exhausting feeling like no one understands or gets it or thinks you’re lying or exaggerating.”
And beyond the daily physical turmoil, Stephanie says she constantly has conversations with family and friends that make her feel like she’s lost her mind.
“Because my disease is invisible, I have family members that say: ‘You look fine, how can you always be in pain? Can’t you just take a (insert any over-the-counter pain med)?’”
Paulette is a technical program manager for a large software company and says the pain is always there. And while on “good” days she notices it less, when her flareups are bad, she feels as though the wind has been knocked out of her.
“People don’t understand the psychological toll it takes,” Paulette said. “Treat it and you risk side effects from the meds, don’t treat it and you suffer. It’s very frustrating because people can’t see the pain in you, so they don’t understand. And you can’t escape it.”
Paulette said she finds herself trying to act normal, when she’s feeling anything but.
Guilt also comes into play, as many women explained the self-condemnation they feel when they can’t perform like a normal mom/partner/employee. Jenn, owner of a far west Chicago suburb home renovation company, feels guilt simply talking about her chronic pain.
“I feel horrible that I can’t do most things a regular mom or wife could do because I know how much pain it will cause,” Jenn said. “There’s also the guilt that if I talk about it too much, I’m either selfish or annoying, so I keep it bottled up inside everyday, hoping and praying for some cure that won’t have the addiction or horrible side effects that [many] drugs do today. So I sit and take nothing and live in excruciating pain.”
Whether you battle chronic pain on a daily basis or not, the bottom line is that it’s time to start supporting people. A strategy of being compassionate, ditching the judgment and simply being a kind person is a good place to start. Because we are all struggling with something. Yes, I said it – all of us.
So what can you do to support someone who has chronic pain?
1. Instead of asking, “Have you tried X, Y, Z?” – try saying, “I’m truly sorry you are dealing with this horrible pain.”
2. Instead of comparing your injury or struggle with a chronic pain sufferer, let your response be a listening ear. Ask them specifically what you can do for them to relieve the pressure of daily life (make a meal, pick up groceries/kids, run errands, etc.), and, if their body can handle hugs (always ask before you touch), give them a sincere embrace.
3. Always let a person with chronic pain know you’re there and thinking of them. A simple text message, call or handwritten card sent through the mail is enough to temporarily boost them up. And if they don’t respond, don’t take it personally.
4. Support (don’t belittle) their dietary choices. It’s crucial for many people with chronic pain to avoid certain foods for fear of a flareup. Ask them what or where they would like to eat. When they order, mind your own business and allow them to eat what their body needs, not what meets your expectations.
The time to live with compassion is now. I’m in. Are you?
Smitten with domestic life but not to the point of unhealthy obsession, “The Modern Domestic Woman” author and St. Charles resident Elizabeth Rago is a freelance writer. You can visit her blog at thecircularhome.com or connect with Rago on Facebook at facebook.com/TheModernDomesticWoman. Feedback can be sent to firstname.lastname@example.org.