I Am Finally Coming Out Of The Health Closet (Why Chronic Illness Sucks)


I have never had good health: that’s just the way my life goes. I could backtrack and tell you about my youth (pneumonia and bronchitis more often than you can say Z-Pac), or about the many false diagnoses over the years. The fact I’ve had two healthy little girls is a miracle that my doctors regard with raised eyebrows (not to say the pregnancies weren’t complicated in of themselves), and the fact that both kiddos seemed to have skipped my completely inadequate gene pool is an equally fantastic blessing.

But instead of giving you my sordid life story (filled with more scopes and procedures and shots and misguided doctors than one could imagine), the biggest thing I haven’t shared is what life is like now. This is rather odd given that I’ve written Op-Eds since I was 13, shared my trials and tribulations [for better and worse] via journalism through young adulthood, and have very rarely had what one would call a filter. Never-the-less, health is something my family has always taught us to keep private. Simply speaking about it honestly made me feel like a wimp…like I’m complaining… like I need to be sucking it up and driving on further.

So, why am I sharing now? What magic breakthrough has evolved to lead me to spill the medical beans? Nothing. In fact, it’s the nothing that has led me to finally embrace my health, my life, my body and what my path is meant to be. It took maybe one of the worst physical years ever to realize this, but I finally was able to accept: this is my health and life, and that’s just the way it is. From what we know, there will be hopeful windows for improvement, small tricks of the trade to bring windows of relief. Heck, maybe years of awesomeness and super-hero crime solving ahead.

But hopefulness aside, this is the cards I’ve been dealt, there is no magic trick, nor speedy answer, nor simplistic resolution down the road. It actually took falling in love for my Oprah “aha!” moment to take hold, after someone said: “I hope you get better and we find things that work, but if overall this is the new normal, that doesn’t change my feelings about you.” Since this has always been my normal (worsening over the years), a professional patient becomes rather proficient at lying to some extent. Yes, all those years of saying “Well, this next medication will totally work!” or “I promise I’ll feel better soon!” honestly only make you feel like more of a failure when no speedy bullet materializes…and you keep trucking along.

So what does a day-in-the-life of trucking along look like?

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If I’m doing what my doctors say (and I have literally some of the best, fancy pants, House-style specialists in the country), I should be doing about an hour worth of treatment in the morning and in the evening. You can see my cheat sheets above, which I had to tape all over my house because I’m so Type B I find it hard to care all that much when a coffee pot is looming and kids are screaming. Yes, I need to drink more water, less lattes and eat even better- but it is easier said than done when I can’t keep food down, take drugs to counterbalance that, whilst other drugs make me lose my appetite. It’s a perfect circle (conceptually, not the band). Go get the worst hang-over of your life, try to eat and report back [if anything, best homework assignment you’ve ever had, right?]

I go to equally fancy pants hospitals once or twice a month, and might travel to a special center a state away because my body is an overachiever and couldn’t have ordinary ailments (go team!) I had a retirement party for the last good vein in my right arm because they all have so much scar tissue from years of wear and tear (I only wish someone had gotten tanked and made an embarrassing speech). I am in the ER normally every-other-month so I’m kind of JLo VIP (I prefer everything to be white and want a giant leopard at the end of my bed). Without going too far in to detail, I will say that my lungs, sinuses, ears, esophagus and larynx have the starring roles in this scenario- plus the occasional liver, heart and digestive cameo- complete with hands that sometimes turn blue and fingernails that aren’t normal. Yes, my deafness seems to be connected to this as well, another reason why I prefer talking with my (beautifully azure) digits. Really, I’m the coolest party trick you’ve ever seen!

This year I have had 1 or 2 moments of supreme brattiness. Times when I’m trying to walk up a simple flight of stairs… and can’t inhale… and suddenly realize I’m only 26 and I just want to wake up in the morning and not feel like I’m 80 with ‘a terrible flu combined with 50 years of chain smoking’ all day. I hate being paranoid of anyone who is slightly sick, knowing that your simple cold is my month-long pneumonia (I will not think you’re rude if you avoid me like the plague. Go for it, friends!) But really? I have all of my limbs, and brain cells [the ones that motherhood and coffee haven’t ruined], and am not growing bark for skin like a special on TLC… So what’s there to complain about? I am still so wildly lucky that words can’t even describe!

Despite my mother’s hatred for tattoos (we’re talking diabolical), I actually have a story about ink which speaks to this very thought and is worth finally sharing as well. Apparently, this is my week to come out of the closet on everything, so I’ll post about it tomorrow… just don’t send my Mom the links, ok?

All in all, this is life. This is it. I am here. I’m alive. I’m happy. And … I’m done spilling the beans. Now, it’s your turn to share!

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Secret Tip: All of my treatments are obviously prescribed, but when I want cool upgrades or supplements or anything of the like- I am still in love with Medrise. I sign up for their free newsletter which emails me alerts when prices have dropped or special deals are being offered, and then I pounce like a tiger-blooded leopard.

Health Sound Off: Riddle me this…how many of you deal with chronic illness yourselves?

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5 comments on “I Am Finally Coming Out Of The Health Closet (Why Chronic Illness Sucks)
  1. Amy says:

    I have Celiac Disease along with several food intolerances. All 3 of my boys have followed suite but have more food allergies and intolerances than I. Like you said, it is what it is and you live on but some days it is trying. It seems like there is always something. My children are generally healthy b/c they were diagnosed young but I went over 20 years undiagnosed so my body has paid the price. I just thank The Lord that I am as well as I am. I could be a lot worse. Thank you for sharing your life with us, Bailey.

  2. I empathize with the chronic pain, and much of what you go through my sister and her girls do as well. My children have recently been diagnosed with Ehlers-Danlos Syndrome, Type III (Hypermobility Type), and I likely have the same and maybe the Classic Type or another as well. Ehlers-Danlos Syndrome is a connective tissue disorder. I thought of EDS while reading your post and wanted to share so you can look into it if you’d like. More information can be found at http://www.ednf.org, http://www.ehlersdanlosnetwork.org, and http://www.inspire.com. I always say I started falling apart at 20yo, although when I think back lately it may have actually started at 16yo. I may soon finally have the answer for all I’ve been through over the years; one diagnosis that encompasses all other diagnoses and ailments over the years. Even though not curable, it feels good to have a correct diagnosis and be able to try to prevent my children from going through as much pain as I’ve experienced. None are great, but if you have EDS then Type III is the ‘best’ to have. Some are more serious and need attention if suspected. Praying you have answers soon too and can somehow be in less pain. (((hugs))) Miranda Johnson. @bctripletmom

  3. Thank you so much for this info! I’m going to go research it now. And keep me posted on how you are feeling and doing- you can email me anytime and we can relate : )

  4. Amy, you’re the best super-momma! You’re so right about late diagnosis with celiac- it wreaks total havoc. I wish people would take celiac more seriously and not think it’s just some gluten-free diet trend/craze vs serious auto-immune condition it really is. I admire you (and you’re always abnormally cute hair styles) : )

  5. Emily says:

    You are amazing, Bailes! Your strength and motivation to enjoy life to the fullest despite the situation displays your beautiful soul. So proud of you!

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