My name is Shai Ford – sooner, rather than later, it will be Shai Bearden.
My urh-mazing fiance is a firefighter. My even more amazing kiddos (sorry, babe), are 11 and 4. I have a thriving Etsy shop, an even more successful coaching biz, and I am the co-CEO of Wild Sister and Editor-in-Chief of Wild Sister Magazine.
I’ve built my business – my life – from scratch. I’m relatively successful, sometimes pretty darn cute, and have one hell of a tribe around me. Take one look at my Instagram and you’d think ‘That woman’s life rocks pretty damn hard’. That’s because it does. My life is also often a struggele.
I have not one, but two invisible illnesses.
This week is Invisible Illness Awareness week, so I am sharing my story. I’m sharing my story for one reason: Support.
Daily, I watch my #spoonie family fight various debilitating illnesses via Instagram, Facebook, and in forums. I watch them fight illnesses that only other #spoonies can understand. Why? Because they’re invisible – felt and experienced by those that have them while those around us are often completely unaware.
So I’m here to for support – to both support my #spoonie family, and to raise support for them. Cancer exists. AIDS exists. Autism exists. They all exist within my own family, even. Invisible illnesses exist, too.
I was originally going to tell you the story of my diagnosis and what my life is like. A journal entry, of sorts. Then I realized I probably don’t have the blog space for that, and it wouldn’t be very interesting. So I’m going to make it super simple: I have both Meniere’s Disease, and Rheumatoid Arthritis.
According to the Mayo Clinic, ‘Meniere’s disease is a disorder of the inner ear that causes spontaneous episodes of vertigo — a sensation of a spinning motion — along with fluctuating hearing loss, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear. In many cases, Meniere’s disease affects only one ear.’
Meniere’s disease is actually sitting in a perfectly quiet room, hearing what sounds like a muted dog whistle so far in your ear that it brings you to tears, and you can’t make it go away.
Meniere’s disease is spending an entire summer watching your 10-year-old daughter play in the pool, begging you to come in, while you come up with a million excuses other than ‘as soon as my head is underwater, I’m going to want to scream’.
Meniere’s disease is having a love of travel as well as friends all over the country, but finding yourself bent over with your head between your legs, with your pinkies literally in your ears, silently bawling your eyes out at 30,000 feet because it feels like someone is ripping your ear drums out and your head is going to pop.
Meniere’s disease is walking down a sidewalk, or sitting in the living room, with your family and suddenly losing all hearing save for a horrible, high pitched squeal while the room simultaneously flashes solid black or black spots (cause, pain), and not being able to do a damn thing about it, while the kids watch you like you have ten heads.
Meniere’s disease is watching a 20 year old video of your grandparent’s anniversary, simply because you miss your grandpa, and realizing that you can no longer hear his voice.
Meniere’s disease is spending time with your father, step-father, brothers, or fiance, and having to concentrate really hard on their lips because their voices cut in and out.
Meniere’s disease is standing in the living room to turn around and realize that your ‘baby’ (27 -year-old) brother has been talking to you and you didn’t catch any of it.
And then, I have rheumatoid arthritis.
I’m thirty, folks. Thirty. 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 ooph 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 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 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. 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.
It’s hiding. So much hiding. Because you refuse to feel or look like a victim.
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.
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 (soon-to-be) 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: Giving in. Sometimes, I just have to give in and admit I’m not a superhero. And that sucks.
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, and umpteen vitamins, when I remember.
11. Regarding alternative treatments I: am on the AIP diet. It works, when I can manage to stick with it.
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.
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: Do FB groups for spoonies 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: let me sleep, or ran me a hot bath. All the time. Thanks, babe.
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.
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.