18 Lessons I've Learned After Living With Chronic Illness for 18 Years

When you live with chronic illness and/or chronic pain, you learn a lot about yourself and your body. You learn about the limits of humanity, of your own finances, and your emotional limits. You learn about the difference between thrive and survive. This isn’t a finite list, and I’m sure I could come with way more than 18 lessons, but here are the ones that stuck out to me the most in the moment:

1. I’m really in tune with my body. I can tell when I’m about to have a flare hours or days before it starts. With just one bite I can tell that a particular food will upset my gastroparesis (GP). I just know.

2. I have no idea what my body is up to. My body does things without consulting me or giving me decent notice. Flares start with no reason or indication. Is that an interstitial cystitis flare or a urinary tract infection? Why did I not sleep? Why did that food upset my GP? Friends and family ask, “Why?” Absolutely no idea. Because it’s Tuesday. Because Mars is in retrograde.

3. Never underestimate the power of stress. I try to control my stress levels, and I’ve developed some pretty good life long practices, but so many things are out of my control. Boyfriends dump you. You have a bad day at work. Trump does Trump like things. Self-care to control stress often takes precedence over anything else.

4. My chronic peccadillos think they’re dominos. When one kicks into full gear, usually another one will follow soon. We all like a little company, right?

5. I’m not depressed, I’m just pissed off. Not often, but once in a while, I get angry at being allotted this particular body. It’s not depression, it’s a legitimate reaction to a life long situation.

6. Emotional exhaustion is real. An average day includes remembering what medications to take when, adjusting food based on how my body feels, and a considerable amount of alertness as to just how I feel at any moment. Living sometimes just feels exhausting.

7. My superpower is living in pain. I go grocery shopping in pain. I cook dinner in pain. I complete a work week in pain. I can be in pain and you have no idea.

8. My other superpower is knowing when to hold my tongue. “You have fibromyalgia? But you don’t look sick. Are you sure that’s what’s wrong?” Yep.  There’s just no telling by looks, is there. “How do you know you still can’t eat broccoli?” Because when I tried it again two years ago I ended up on a liquid diet for three days. Thanks though. 

9. Self-care is a priority. You make choices, but it’s to protect yourself. Do I want to celebrate your 35th birthday by seeing a comedian that doesn’t start until 10 p.m.? Sure I do, but my body doesn’t. Maybe there’s a way we can celebrate earlier?

10. Chronic illness is freaking expensive. Medications. Supplements. Air purifiers. Humidifiers.  Essential oil diffusers. Heating pads. Decent health insurance.

11. I offer great referrals. You want to know where to get a great light blocking sleep mask? A fantastic massage? Organic aromatherapy? Heating pads? Non-scratchy wool socks? Cute but arch supporting shoes or boots? Lotion, make-up, and really anything for sensitive skin? Assorted doctors? I’m your lady, and if I don’t know the answer, I know someone who does. And if it’s electronic, there’s a good chance I did a lot of research before buying it (thank you Consumer Reports), so really, check in with me first.

12. I know things could be a lot worse. I have friends with same or similar chronic illnesses, and I know my own could be more debilitating than they already are, so I’m very grateful that my functioning is what it is.

13. Genetics can really suck. My asthma is likely from my mom, but I’m at high risk for arthritis (here’s to a mother with two fake knees, a maternal grandmother with a fake hip, and a maternal grandfather whose had four hips and one knee). I’m also a bomb waiting to go off for thyroid problems (father is under-reactive and mother has Grave’s disease). According to multiple doctors, there’s a good chance I’ll develop thyroid related issues either if or when I get pregnant, or when I go into menopause. Not sure which one sounds worse…

14. Fibro fog is real. And it’s creeping up on me – I didn’t have it or recognize it for what it was, but for the last few years, I’ve felt it periodically. It’s like literal fog: you can see and identify some things, others you can’t, but you have a sense of a lot being out there.

15. My good days are good, but I still can’t overdo it. There are hours or days when I feel great. When I realize I’m completely pain-free, not nauseous, not tired. I do what I want on these days. And what I want might very well be being snuggled up on a couch with a cup of tea and a book. Or binging through an entire season of “The West Wing.” Or walking through the forest preserve. Or doing laundry. My choice. But no matter how good I feel, it still doesn’t mean I can get it into my head that rock climbing or a two hour salsa dancing class is a good idea.

16. The fine art of looking professional while being cozy. I have a lovely selection of Ponte leggings and cozy tunics and sweaters. I particularly save them for days when wearing jeans actually hurts, or are too hard to get into. (I’m also a huge fan of fleece lined leggings, and if you know who invented them…can you send me their way so I give them a hug?)

17. Smelling the roses is important. I’ve learned to really appreciate the small, joyful, full of living moments. Reading to a kid with them in my lap. Snuggling with a dog. The way sunlight filters through the trees in the fall. I stop and pause and try to hold on to these moments because they won’t last forever, but right now, in that moment, they’re perfect.

18. Sometimes you set goals and can’t reach them. Right now I can’t think of an 18th; it’s been a long day. Such is life.

Getty Image by jacoblund