There's a tag line that circulates around the chronic illness community. A catchphrase of sorts--a statement some may consider "cutesy" or "cliche," but nonetheless conveys a message I'm willing to bet all who deal with chronic illness long to make known:

"I'm not shady, I'm sick."

Now, I'm adventurous enough to assume (yes, I know, assuming is bad, and I don't mean to make a donkey out of anyone) that there was at least one person who read that statement and had at least the passing thought, "Yeah, Becca, I know you're sick. You blog about it, you posted on facebook about it until you deactivated completely, and you use [insert any assistive devices here]." If you had that thought, don't worry, I'm not singling you out as a bad person, I'm merely using that thought process as a starting point for a deeper explanation.


Yes, you may know I'm sick. Any number of the 1,000+ (possibly less, I haven't counted for several years because who cares?) people on my currently deactivated Facebook friends list knows I'm sick. Anyone who sees me on the rare occasion I'm able to venture outside my house knows I'm sick. Anyone who works with Roger, mom, or dad knows I'm sick. Anyone who goes to church with Roger and me or with my parents/siblings/Nannie knows I'm sick. But there's a huge difference between knowing and understanding.

I was tempted to copy/paste the definition of each of those words ("know" and "understand"), but instead of boring you with the nuances of dictionary entries, I'm instead going to share my (simpler) definitions to highlight the difference between the terms. Anyone can know anything. Knowing can be learned by observation, research, examination, logical deduction, or any other way one can learn about something. Understanding requires a more personal component - experience. To truly understand something, you must have experience with it on a personal level. Understanding cannot be gleaned from a textbook the way knowledge can.

If you're not sure what any of this has to do with maintaining relationships while chronically ill, just stay with me for a moment I'll get to it, I promise. I just felt it was important to clarify the distinction between knowing and understanding before I elaborate on the actual topic of this post. That said, let's examine how/why it's hard for those dealing with chronic illness to maintain relationships, regardless of how much they'd like to.

I used to be so incredibly addicted to my phone/computer.  Seriously, it's almost embarrassing when I think about the copious amounts of time I used to waste on electronic devices.  I did not go anywhere on the Centre College campus without my computer (albeit I had to use it to take notes in my classes, so I usually had the bag with me, but no matter where else I was, my computer was likely at least sitting out and plugged in).  Once smartphones came out, there was no hope left in the world, because those social networking sites and miscellaneous sites with videos/music were with me in a much more convenient way.  2-minute break at work with no customers in the store?  Quick, everyone check your Facebook app!  Standing in line at the grocery store?  Hurry and log onto Twitter and see if anyone has posted any entertaining 140-character snippets!  In the middle of a conversation/movie and feel your phone vibrate?  Check that text message NOW so you can immediately reply to it because the person sending the text will hate you if you take too long, plus it's important and you simply can't focus on anything else until you make sure you've given that text message the love and attention it deserves.  I'm not joking, people.  It was bad.  So.  Embarrassingly.  Bad.

I could go on and on for several paragraphs about how I now intensely hate cell phones, social networks, and this technology-age, but that's not the topic at hand here.  I just had to share that confession in the previous paragraph to show you how perspectives can change.  Because at this point in my life, I'm afraid you'd be sorely disappointed if you sent me a text message or contacted me via facebook, twitter, or the like and expected a quick response (or any response at all) from me.  It simply does not happen anymore.  It's not that I don't enjoy hearing from you, and it's not that I don't want to talk to you, it's because:



Maintaining relationships takes energy.


When you're a healthy person, energy is just an inherent part of life.  Yes, you may work a job that leaves you exhausted when you leave work every day.  You may have kids that always seem to be most active on days after you've had sleepless nights.  You may have a few family members/friends/acquaintances whom you love dearly, but with whom you have to prepare spending time because it's a draining experience.  It is possible to feel a lack of energy when you're a healthy person.

When you have a chronic illness, though, the word "energy" has a completely different meaning.  Normal, every day activities that used to be second nature suddenly become either significantly harder, or downright impossible.  You constantly have to make decisions about whether or not something as simple as a shower is something you want to try to do today, or if you should save your energy so you can get something simple together to eat for lunch, which leaves you with the choice between grabbing something that's already made, or throwing something together yourself, all the while taking into consideration that if you take time and energy to throw a simple bowl of rice and veggies together, you may not have energy to physically eat it later--because lifting a fork to your mouth and chewing takes a lot more energy than many people realize!  And the commonplace thing that takes possibly more energy than any other (at least for me) is communicating with people.


Now, I don't want to sound unappreciative at all, because I truly am thankful anytime I receive even a small note from someone that says, "Hey, just thinking about you today," but there are times that my phone alerts me that I've received a text message and I say (out loud), "Crap," a word which, in this case, means, "I don't have the energy to talk to people today." (That real definition said in my head because it would take too much energy to say it aloud.)  More often than not, on days when my energy level is low, I don't even look at the text for a few hours, and even after reading it, I often don't answer for a couple of days or longer (unless it's an emergency), because it takes a lot of energy to think of a reply to anything--even a straightforward question--and takes a lot of energy worrying about whether or not the person on the other end will send another reply back, forcing me to go through the process again.  I have an email sitting in my inbox that was delivered two Saturdays ago, and I read it over a week ago, but I haven't even begun to sit down and reply to it because it would require energy I don't have right now.

This is why I, a person who has always been notoriously good at keeping up with people from all periods of my life, have become someone who rarely reaches out to connect with others.  It's not just because I'm sick and am dealing with the isolation that inevitably comes with having a chronic illness.  It's not just because my friends, etc. are busy and I don't want to bother them.  It's because I don't have the energy it takes to keep up with relationships.


Want to hear something totally crazy?  I absolutely LOVE going to church.  That's not the crazy part.  I have a wonderful church family and Sunday School family -- I love each and every person there, and I know they love me.  For the past nearly two years (as far as being able to go to church goes), I've only been able to make it to a small handful of services.  I always feel like I'm missing out on a huge part of my life, because being in the Father's house and raising my hands/dancing/singing in worship/ and hearing His Word are feelings unmatched, but the level of disappointment I feel on the Sundays I'm unable to attend has lessened.  And that's not because I'm okay with having to miss being in His house, but if I'm being 100% honest here (something I always set out to do with this blog), it is so exhausting to go to church/Sunday School and know that people will want to talk, people will have questions to ask, people will want me to give an update, and that will take every ounce of energy I have saved up for days.


(I realize that sounds like a horrible thing to say, but please know that I don't mean it like that.  I'm not upset/annoyed that so many people care and want to make an effort to talk to me, or that you're asking me about my illness, how I'm doing, if I'm improving, or anything else.  In fact, I'm so very thankful God has blessed me with so many people that care.  It just wears me out to be in any situation where I have to communicate/talk/hang out with anyone else, whether that's church, a text message, a family birthday party, anything.  Talking takes a lot of energy.)

Which sort of brings me to my next point:

I don't have an answer for the question that always gets asked before anything else can be said: "How are you?"


I don't have an answer for that question.  I just don't.  I mean, I do have an answer, but to give you the real answer to that question, I would need more energy than I can even imagine having, and you would need practice knowing how to respond, because the full, real answer for how I'm doing cannot be summarized in one or two sentences.  I've noticed that sometimes the question is phrased a little differently, or has a clarifying question added onto it: "How are you?  Are you feeling better?"  And that's even harder to answer, because not only do I not have any energy to explain how I'm really doing, I have to use energy to worry about how I can say the following without putting someone in an awkward position when he or she realizes my answer is not an expected one:

"No, actually, right now I'm worse than I was a few months/a year/etc. ago because I'm actively treating multiple diseases that have infiltrated my entire body for over 20 years and I still have a long road ahead, during which time I'll have even more periods where I'm worse off than I was several months ago because in order to get rid of these diseases and infections I have to actively do treatment that kills them, and when they die they release endotoxins and neurotoxins and all kinds of fun stuff which leaves me in a somewhat constant state of herxing--which, by the way, means I will feel worse before I feel better because I have to endure the die-off of bugs and the release of toxins that affects every tissue in my body if we want to effectively kill said organisms for good."

See? Not exactly an explanation that's easy and definitely not an explanation I have energy for each time I'm asked, and the explanation above is as watered-down a version as I can make it if I give a real answer to how I'm doing and if I'm making progress. So as many of us do, my husband included, when we're asked that question nowadays, we usually just say, "Honestly things are bad right now but we're on the right path." And we leave it at that, unless the person asking is one who truly understands the ins and outs of this illness or who wants to hear all the details. Or even more than that, someone I know who not only wants to hear the derails but with whom I actually can devote energy to explaining.

I'm running out of steam as I write this, so unfortunately I'll have to finish in another post at a later date (this has been saved in my drafts for almost a year now already), but here's the bottom line:

If I don't answer your text, if I don't pick up the phone when you call, if I don't feel like having a conversation or telling you how I'm doing, if I make and cancel plans (even if the plan consisted of a short phone call) with little to no advance notice, or any number of other things that are generally regarded as unacceptable in 2015, I want you to know this:

It's not because I don't want to communicate/spend time with/talk to you, it's simply that I don't have the energy to even leave bed 90% of the time, and what little energy I do have, I try to save for the moments I may be able to enjoy a TV show with my husband, take a shower (even though I have a shower chair this is still a major task), fixing my own smoothie (or at least eating it on my own with a spoon instead of having to be fed by someone else because my strength isn't there, singing along to praise music/writing my own christian hip-hop lyrics (more on that at a later date, as well), and other daily activities. I care about you and your friendship, I'm happy you care enough to reach out and/or ask about me, I'm fortunate to have so many rather warriors lifting me up, but I simply do not have the energy to hold conversations right now.

I write this with the best of intentions--I don't want to hurt anyone's feelings by making them think their concern and connecting with me is not appreciated, but I also want to be very honest in saying that no, I will not always be able to respond to something you send me. One day I'll be back to my old self (except likely a more mature, wiser, life-experienced self), and I'll be able to talk and enjoy things like attending church, hosting game nights with our friends, going ice skating, and replying in a timely manner. My post-Lyme bucket list goes on and on...the energizer bunny who's going and going will one day again have nothing on me, because like over said many times, I know God is healing me.

But at this point in time, I'm not a person to come to if you're looking for an instant reply to a text, when you want to go out and do something like see a movie or eat at a restaurant or anything that involves me getting out of my house or bed--and that is okay for now.

That's okay because this is a temporary situation. I'm not even just talking about Lyme and friends, either, I'm talking about our time on this earth. It's temporary, and all we can do is to make the best we can out of every moment, and take each day as it comes, one day, one hour, one minute at a time, until the day of healing (whether on this earth or with the Lord above in heaven) comes.

Thank you all, sincerely, for taking the time to read--but more than that, for taking the time to understand.

God bless,

Becca

Hey all,

The following post is something I shared on Facebook on September 4th and it's important enough to me I felt like sharing it here would be appropriate. My Facebook account has been deactivated since May (just the healthiest thing for me right now), and I only reactivated it on the 4th for not even 24 hours (deactivated now), but I share something to this effect with every passing year--it's a cathartic experience for me and honestly I feel the truths deeper as time passes, so it's that writer's NEED inside me to write it out, and it's my desire to hopefully help even one other person along the way, hence why I post something similar every year on Septembee 4th.

Here's the post (from my reactivated-for-a-day Facebook page) from 9/4/15:

Hey everyone, I'm only reactivating for a while on this date because September 4th is a very important milestone date for me and I always like to mark the occasion by praising God and letting others know how much He's already done in my life, and I know He's still working on me (🎶to make me what I ought to be🎶) and will eventually deliver healing from my current battles.

September 4, 2004, I returned home after spending 2 months at Remuda Ranch, an eating disorder treatment facility, due to the battle with anorexia that has consumed my life now for 12+ years.  I can't believe it has been 11 years since I last rode out of the place that saved my life in a van at 3am to catch my early flight from Phoenix.  I know Remuda has changed considerably over the past 11 years, so I can't speak directly for it as it is today (still great, I'm sure), but when I was there in 2004, it was the absolute best place I could have had the privilege of being a patient and receiving healing not only physically and mentally, but spiritually.  I give sole credit to God for providing the means for me to go to Remuda, and for using it as the place to not only literally save my life, but to give me the skills to make it through the remaining three years of high school and 4 years of college (not without struggling and having slip-ups), but Remuda, along with my family, mentor, friends, and student health center staff helped me stay out of another treatment center throughout my high school and college years).

Remuda Ranch and the friendships I made there will always have a special place in my heart that absolutely cannot be explained in words.  Even though I ended up in UNC's eating disorders program in September and October of 2011 (a place I wouldn't hesitate to recommend to anyone--a truly excellent program, especially if you are ready to receive the help), this date, September 4, is still one of the most memorable dates in my life.  Of course coming home after being away from my family and the rest of the works for 2 months was wonderful, but three years after that, September 4th 2007, my first year at Centre, is the date Rog and I started officially dating, and I used to call this a bittersweet date since the two coincided, but going through what we've gone through together in the past eight years, it's no longer bittersweet to me.

 I no longer have the "desire" my disordered mind had to go back to Remuda, and my memories made there, while not all of them were great at the time, are ones I will treasure forever, so why on earth would I consider it bittersweet?  My discharge date from Remuda used to make me sad, because I longed for that sense of community, but now I only look at this date with love because without God making it possible for me to go to Remuda, there's a chance I wouldn't have been around three years after to start dating Rog.  And in the 4+ years we've been married (since I've been deactivated I didn't post on our anniversary in June), we've endured more than we ever could have anticipated (definitely more than we would prefer), starting with the UNC stay 3 months into our marriage, and now having the past 2.5+ years of our life being put on hold due to chronic Lyme Disease and the multiple co-infections that come with it, leaving me bedridden most of the time as we travel the long, painful, and slow road of treatment to healing. 

But in a very strange way, chronic Lyme and co-infections have been a blessing in disguise as far as my eating disorder is concerned because even though I still battle mentally, it has taken a back seat (hopefully permanently), because the single most important thing to me is to do whatever it takes to heal.  This includes appreciating my body for what it can do when it's able, nourishing it with the best quality nourishment/nutrition possible while following the "Lyme diet" guidelines, taking the steps we need to restore my body to health, rebuild my immune system, and kill the various bugs that have been attacking every my body for 20+ years (un/misdiagnosed until 2.5 years ago), leaving no stone unturned, and give my body the love and care it needs by listening to it when it tells me to not push myself too hard, to eat when it's telling me I need quality nourishment (if I'm able--sometimes these infections make it not possible), and doing my best to not focus on the physical appearance or shape of my body or how it looks in the mirror because guess what:

it doesn't matter.  

What you weigh doesn't matter.  How you look in this or that outfit doesn't matter.  The number on the scale doesn't matter.  When you're put in a position like I've been now for 2.5 years, you realize you would give up literally anything to be able to just function.  Our bodies are amazing works of art created by God, who calls us beautiful, and if beauty is in the eye of the beholder, who are we to tell Him He's wrong?  A healthy body that can walk, laugh, leave the house, do any number of activities, work, visit family, travel, or simply love a day without pain--that is the best gift anyone could ask for.  If you're able to walk, hold a pen, use a computer, enjoy the seasons and their beautiful changes, or even just enjoy a TV show with your husband/wife and are able to keep both eyes open (my right eye has basically remained closed for the better part of a year and a half due to trigeminal neuralgia as a result of Lyme and friends), be thankful and rejoice in that.  Physical beauty fades, and it's not what's important anyway.  

Cherishing moments we have with family and loved ones, learning what is truly important in this world (it's not thinness, wealth, fame, or any other thing we too often yearn for as humans), and glorifying His kingdom in every possible way, especially by witnessing so more souls seek Him--THOSE are the things that are important.  Even on days when it's hard to focus on that, and I'll be brutally honest, there are a lot of days I feel down and find it hard to do so, THOSE ARE THE THINGS THAT MATTER.  Cherish your life, treat your body and your mind with respect, and above all give thanks to God for reading this because that means He let you wake up this morning and live through today.  Without God I never would have made it through the treatment centers I was in in 2004 or 2011, and I most definitely wouldn't be alive today if it weren't for His mercy, comfort, grace, and ability to be my strength when I have none.  

So today, September 4, 2015, I want to proclaim this date not bittersweet, but a day of thankfulness for what He's done and what He's still yet to do.  I don't for one moment believe He's finished working on this good work He started in me, and it's my hope that I'm able to praise Him throughout the bad days as well as the good, because I know the ultimate Physician will deliver me when the time is right--and that's HIS time, not mine.

I hope everyone has a manageable (or even good!) week!

God bless,

Becca