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 you and torture you in silence forcing your every move to be sickly debilitating. My disease happens to be something called “Hailey-Hailey” disease (or HHD). Never heard of it? Yeah, neither has anyone else.
In a nutshell, HHD is a rare genetic disorder where 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 someone’s stuck a hot knife onto 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 and oozing out of my skin, next to tears most minutes because of the pain, nobody knows because all that mess is covered up and I don’t “appear” to have any problems. Plus — my chronic pain takes over life and easily segues into anxiety.
I reasoned if I was soldiering through this horror, all with a smile on my face, makeup applied, and sporting a cute outfit, certainly others were suffering as well.
A simple “all call” on Facebook brought not only solidarity for those with chronic pain, but an overwhelming sadness for the individuals who live in agony on a daily basis.
I asked three simple questions in regards 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 4 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.”
Yet beyond the daily physical turmoil, Stephanie says she constantly has conversations with family and friends that makes 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,” explained Paulette. “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 also 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,” says Jenn. “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 most of the 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 — it’s time to start supporting people. A strategy of being compassionate, ditching the judgement, 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 “Have you tried x, y, z?” try saying, “I’m truly sorry your dealing with this horrible pain.”
2. Instead of comparing your injury or struggle with a chronic pain sufferer, leave your response to 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 hand-written 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?
This article was originally published on December 27, 2018, in the Kane County Chronicle.