Hey, Wild Souls! It’s Invisible Illness Awareness Week! I debated doing this post, because I’ve done one previously on a personal blog, but then I heard this inner voice: Shai, remember how many people follow you? How big your Wild Sister audience is? You have to do this post. You have to be a voice.
So, here I am, joining the chorus of #invisibleillnesswarriors who are speaking up this week, letting the world know what it means when you ‘Don’t look sick’.
As a PSA, this post isn’t meant to be a negative, woe-is-me post. My life rocks. I don’t want anyone feeling sorry for me. What I do want is to raise awareness for the millions of other people who are dealing with chronic, invisible illnesses because, while we may look okay on the outside, what’s going on inside is often a very different story.
Here’s an updated version of my post from last year:
I’m thirty-one, folks. Thirty-one. I was diagnosed shortly after I turned 28, and suffered symptoms for nearly a decade before the doc and I put forty and forty together. I mean…who guesses RA with someone so young? Not this gal. RA, according to the Mayo Clinic, is ‘a chronic inflammatory disorder that typically affects the small joints in your hands and feet. Unlike the wear-and-tear damage of osteoarthritis, rheumatoid arthritis affects the lining of your joints, causing a painful swelling that can eventually result in bone erosion and joint deformity. An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body’s tissues. In addition to causing joint problems, rheumatoid arthritis sometimes can affect other organs of the body — such as the skin, eyes, lungs and blood vessels.’
That’s a lot. RA is just…a lot. Every day, your body is fighting itself, and there’s nothing you can do about it. Before you even face your daily tasks, jobs, and parenting needs, you’re exhausted and in pain simply because your body has decided that it is the enemy. There are things you can do to make it better….sometimes. Most of the time, not so much.
Most of the time, RA is waking up in the morning and realizing that you can’t move. Literally. Your son is curled up next to you, begging you to get out of bed, and it takes every ounce of energy and oomph you have in you to lift your hands and unlock the tablet so he’ll chill long enough for you to somehow, some way, will yourself out of bed.
It’s sitting at Moe’s, picking at the nachos you’ve been craving for weeks, taking deep breaths and fighting back tears while you watch your other half eat, because you can’t bring yourself to admit that you can’t grip your fork.
It’s constantly feeling like you’re a let-down and avoiding relationships and friendships because you’re afraid what’s left of you won’t be enough.
It’s picking up your cell phone (or a glass of tea, a dish, a pile of laundry, or anything else a mom, wife, or business owner may pick up), and watching it hit the ground before you realize you didn’t actually have it in your hand.
It’s wanting to spend time with people, but not wanting to explain that a 15 minute drive for coffee simply hurts.
It’s dealing with the yin and yang of people who either never consider you, or make choices for you, while wishing with everything in you that someone would just love you as you are, consider you, and listen to you. Because, you know, you’re a human, too.
It’s being devastated by being booted out of and uninvited from big things that mean a lot to you because folks are ‘only thinking of you’, while not once asking how you feel about things or what’s important to you.
It’s having a great hatred for spoon-sucking grocery stores…because driving, and cold, and carrying, and lifting, and everything someone with RA doesn’t want to do all in a short period of time.
It’s completely avoiding sitting on the couch or laying down with the kids because a) You’re not sure you can get back up and b) You know you have the ability to fall asleep in .2 seconds.
It’s being completely exhausted by something as simple as changing clothes or taking a shower.
It’s kissing your husband goodbye as he leaves for a 48-hour shift on a Monday morning and realizing at 7:30 on Wednesday morning that you should probably change clothes, because you haven’t. Changing clothes is a waste of a spoon.
It’s wanting nothing more than to hug your spouse, or cuddle with your kids, and fighting back tears or holding back winces of pain because them leaning on you feels like you’re being stabbed.
It’s making it a flight and a half down three flights of stairs and having to stop and rest before you can finish the trip.
It’s having kids who are so used to this that they stop and sit right next to you until you’re ready to keep going like it’s no big deal.
It’s refusing to show that much weakness when adults are around and pushing your way through all three flights at once.
It’s knowing your son and husband can’t sleep if it’s hot, and tossing/turning all night because you’re freezing, and hurting, but you’re mom and that’s what you do.
It’s being exhausted. All day, every day, before you even do anything.
It’s being stressed one day, by a handful of seemingly small things, and waking up in a full-blown flare the next.
It’s constantly trying to find the balance between being strong and fighting through it, and giving in and allowing yourself healing space.
It’s hiding. So much hiding. Because you refuse to feel or look like a victim.
It’s being called a ‘victim’. Repeatedly. By people who should be there for you.
It’s sitting in the bottom of a shower, sobbing…because the day is finally over…because the hot water feels so damn good…because it feels good just to cry….because you have no idea how in the hell you’re going to get out of that damn tub.
It’s hopping on Instagram and scrolling hashtags such as #invisibleillnesswarrior #chronicpain #rawarrior and #butyoudontlooksick at 1am because you’re in so much pain you can’t sleep and you know that is where you’ll find an amazing support system to talk to.
That. That is life with invisible illness. That, and so much more.
Invisible illness is also being able to sit here on my couch, cuddled up under a blanket because the cold air is too much for me, and looking around, gratefully, at the wonderful life I live. I have not one, but two invisible illnesses. I am also a successful, loved, happy wife, mom, biz-owner, coach and friend.
And all of that is okay.
Many of the people who are participating in Invisible Illness Awareness week are doing the ’30 Things’ meme. I’d hate to be a ruiner, so here it is:
1. The illness I live with is: Meniere’s Disease and Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2006 and 2014
3. But I had symptoms since: 1995, and 2004
4. The biggest adjustment I’ve had to make is: Being okay with not living up to the expectations of others, and realizing that not being able to live up to those expectations sometimes makes you ‘the bad guy’.
5. Most people assume: That I’m okay. I mean, I look okay, so I must be okay. No?
6. The hardest part about mornings are: Everything. Mornings are the worst. Mornings are that pivotal moment in the day where you realize things are going to be amazing, or they’re going to really suck, and you now have 14+ hours to get through.
7. My favorite medical TV show is: House, M.D….cause he’s uber sexy.
8. A gadget I couldn’t live without is: a heating pad, especially during winter months.
9. The hardest part about nights are: Everything. Nights and sleeping are worse than mornings, especially when you bedshare. Sleep is elusive.
10. Each day I take __ pills & vitamins. (No comments, please) – 2 pills, umpteen vitamins, CBD oil, and multiple herbal infusions.
11. Regarding alternative treatments I: am on the AIP diet. It works, when I can manage to stick with it. I’m also an herbalist and use herbal infusions to help with inflammation.
12. If I had to choose between an invisible illness or visible I would choose: I’d stick with invisible. I know invisible.
13. Regarding working and career: I haven’t let it stop me, so far!
14. People would be surprised to know: I spend the majority of my time trying to fight through things when I really just want to cry.
15. The hardest thing to accept about my new reality has been: that it’s not going to go away. Instead, it’s just going to keep getting worse. It’s been 2 years and I still have a hard time with that.
16. Something I never thought I could do with my illness that I did was: get on a plane, again. I did it! I cried almost the entire flight, but I did it!
17. The commercials about my illness: amuse me. Take this medication to fix one thing that gives you 4373734 other things!
18. Something I really miss doing since I was diagnosed is: having energy.
19. It was really hard to have to give up: gluten and potatoes.
20. A new hobby I have taken up since my diagnosis is: Does taking naps count?
21. If I could have one day of feeling normal again I would: Take the kids to SkyZone, jump all day, sleep a great night of sleep, and wake up feeling normal.
22. My illness has taught me: that you can explain things to people 17247324 times, and they’re simply not going to understand because they don’t experience it.
23. Want to know a secret? One thing people say that gets under my skin is: ‘What’s wrong?’ Seriously. Worst thing ever. The same thing that’s wrong with me every day. Living hurts. Plain and simple.
24. But I love it when people: Give me great big, but gentle bear hugs. Sudden movements hurt, but pressure feels amazing and I love to be hugged.
25. My favorite motto, scripture, quote that gets me through tough times is: Just do it. (Though, I hate Nike…)
26. When someone is diagnosed I’d like to tell them: ‘I’m here for you’, because ‘It’ll be okay’ and ‘It’ll get better’, most of the time, aren’t true.
27. Something that has surprised me about living with an illness is: how exhausting it is.
28. The nicest thing someone did for me when I wasn’t feeling well was: ask me to be in her wedding anyway. She didn’t care if I had to be carried down the aisle (I didn’t), or if I didn’t show up to pre-wedding events. She just wanted me beside her on her big day, and that was easily one of the greatest things anyone has ever done for me. I still cry over it.
29. I’m involved with Invisible Illness Week because: of two things. 1) I want to show those without an invisible illness that invisible illnesses come in all shapes and sizes. Badass Biz owners can be suffering, too. 2) I want to show my fellow spoonies….well…that badass biz owners can be suffering, too. Anyone can. We are in classrooms, courtrooms, chat rooms, and offices, in every type of job, from every part of the word. You are not alone, love.
30. The fact that you read this list makes me feel: Nowhere near as vulnerable as my above post does, and possibly wondering if you’re just bored.
If you’d like to learn more about invisible illness, head on over to invisibleillnessweek.com.
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