Gentle Reader,
Today marks the beginning of Invisible Illness Awareness Week. Fitting, then, that I should be couch-bound with a flu-turned-nasty-cold.
Not that my coughing and nose-blowing are anything near invisible.
I belong to a Facebook group specifically for women who battle chronic illness. These are tough, tough people. Each one wakes up every morning in some kind of pain. From POTS to IBS to Fibromyalgia to Chronic Fatigue (or whatever it’s named now) to Psoriatic Arthritis to debilitating migraines to Ankylosing Spondylitis and on and on. Every day, often every moment, is a challenge.
I know many in real life who suffer as well. Lyme and Celiac (the actual disease, not the trendy abstaining from gluten) and Chron’s and Ulcerative Collitis. Depression. Anxiety. Endometriosis. PCOS.
And it’s not invisible.
Not to us.
People understand things that they can see and hear. If I were to lift up my shirt to reveal the scar that stretches from my sternum to my waist, you’d have no doubt that I once had a tumor removed. Thing is, not all suffering is attested to so easily. Sometimes, there’s little ready evidence to go along with it.
Most of the time, unless you pay special attention, it’s not ovious that I feel ill at all.
That doesn’t mean I don’t.
It also doesn’t mean that I’m a hypochondriac.
On a good day, a fantastic day, I feel like I’m just about to come down with something. My joints hurt. I’m tired. Never sure that whatever meal I just ate isn’t going to reappear in a gruesome fashion.
On a bad day, the room spins and I spike a fever and my liver swells. The shadows under my eyes darken. My hair hurts.
When I’m particularly anxious, my heart pounds so loudly I fear everyone in the room can hear. I fidget. I talk more than usual, about nothing.
But you might never know that something is wrong. Never see it.
So many are burdened with a load they can’t easily explain. I think of my mom, who for years has counted a handful of days without a headache a “good month.” She goes to work. Does what she has to do. I think of my brother, whose only evidence for the chronic pain in his feet comes in the form of surgery scars, visible only if he removes his shoes and socks. He does what he has to do. Coworkers who grit their teeth through nausea. Mothers who long to take their children to parks but have to settle for watching movies in darkened homes.
It’s not invisible.
Not to us.
Chances are good that you know someone who is chronically ill, even if they’ve never said a word about it. Sickness is no respecter of persons. It cares nothing for class or income or gender or geography. It strikes down the old and the young. The advantaged and the disadvantaged. The weak and the strong.
So, be kind. That’s my first word of advice. Be kind to people. Don’t assume that you know the whole story. (Or that you’ve got a cure-all). Listen. Ask questions. You may not understand, and that’s okay. Knowing exactly what it feels like to deal with x, y or z isn’t important. Love is important. Support is important. Resisting the urge to judge is important.
My second word of advice? Don’t make it about you. Don’t take it personally when the ill ones in your life have to leave early or can’t come at all. Trust me, such things frustrate us more than they do you. It breaks our hearts to have to miss out. We get it if you feel upset and if you need to talk about it, but please remember that we are the ones living with this every single day. Our entire lives are impacted. Disrupted. We aren’t “doing this” to you. It’s being done to us and the ripple effect never seems to end.
Lastly, pray. Pray hard. Not just for healing, though we’ll gladly take that. Ask God to strengthen our faith. Ask Him to give us eyes to see beyond the darkness of the moment. Ask Him to remold our wills, our desires, our plans, so that we find purpose and hope in each day. Ask Him to grant us a weird sense of humor, because some of this stuff is just so ridiculous and we have to laugh. Ask Him to enable us to turn our suffering over to Him, that He might use it for something mighty and good and glorious. Something far beyond our imagining.
And remember.
It’s not invisible.
Not to us.
P.S. – I’d be falling down on the job in a major way if I didn’t alert you to the fact that it’s also Banned Books Week. Celebrate your freedom to read!
I love the way you can put my daily struggle into words. I oscillate between trying to keep my illness invisible and trying to get the word out there that not all people who are gluten free are on a fad diet. It’s a losing battle. Yesterday I went to a gather and ate something that had I been the first person to have it, would have been safe, instead I’m dealing with all those Celiac problems I try to hide because you are right, being chronically ill requires a sense of humor. I feel like it is always a balance between trying not to ruin the party and actually getting to go.
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I hear you, my friend. The gluten-free fad really frustrates me because I know people like you actually suffer. Someday we’ll throw our own chronic illness party, complete with bubble suits.
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Awesome post. I have endometriosis. I’m not in pain everyday (thank God), but when I have my bad days several times a month, it hits me hard. I’ve been wanting to get on my bike and ride all summer and fall, but can’t because I don’t have enough “spoons” by the time I get to it. I have gained a lot of weight from all the different hormonal treatments that do barely more than attempt to treat symptoms. I understand being stuck indoors watching movies with the kiddo cuz my endo has developed into depression, instead of being outside and enjoying the sun. Bleh. It sucks. But like you said, there are days when we have to get up and go on with the day, regardless of how we feel, and do what needs to be done.
I’m there for you if you need anything.
~Jen
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I love you, darling. I’m here for you as well. For reals. We’re in this together!
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Thank you for your words friend! Having a parent who has suffered my whole life with a mental illness I understand that some illnesses are not visible. Also my colleagues daughter lives with POTS and she is in 8th grade. At school, it is so hard for her friends and classmates to understand because they cannot see anything wrong on the outer. You share such wise words here friend. I am so thankful for you. Praying you feel better soon! Love you!
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