When You Find You Are U.I.I.S. (Undatable invisible illness sufferer)

This one’s for the single ladies (or gentlemen) who find themselves not only chronically sick, but chronically single.  I almost titled this post “girl interrupted”, but for me it’s not like I ever had a steady healthy life to interrupt, it’s more like health troubles have been the gremlin to the airplane of my life since my teen years.

Tonight for reasons I cannot even reconcile to myself, I started watching one of those “reality” (cough) dating shows tonight. I really hate most of these shows because they are not anywhere close to reality, the men tend to be immoral, shallow, narcissistic… The women are trashy, vacuous, desperate, catty….. 

I will only say I am watching (hopefully) a slightly better one on A&E, but still… This behavior is unforgivable. As I watch these people who for their own various reasons subject themselves to the world of online matchmaking, it made me think of loneliness and desperation and the lengths people will go to to find love and companionship. 

Being chronically ill can be incredibly lonely, whether you have close family or not (thankfully I do❤️). And like I have talked about in past posts most C.I. People see both friends and family walk away as illness goes on. Even if you are somewhat functioning that doesn’t mean that dating is easy or possible. Most people have avenues to meet others that would fit their criteria for a significant other. But what about the chronically ill? Even for the “functioning” chronically ill this may be close to impossible.

I function; meaning I am not bedridden and I can hold a job, that doesn’t mean every day isn’t a struggle, but I do. But functioning in what’s required of me means sacrificing everything else, and a lot of the time there’s not much left of me. What is hard to navigate is that I seem to have a few months every year when things seem pretty good; I have better energy and start being social again, being able to exercise, and feel reintroduced to my own humanity. It’s in these times I think “well maybe I can start to think about finding someone”, but then inevitably things take a dive again and I go back to survival mode, bare basics, just getting by. For me I took another dive right at the end of May and I had to start saying no again to social activities and almost everything outside of working. 

How does one date a hermit? In my personal experience I guess they don’t.

SO WHEN YOU ARE SICK YOU: 

YOU CAN’T MEET ANYONE

Firstly you would have to actually meet someone. But how if you don’t go out? There are no weeknights out with friends. There are no group social activities. Church attendance may stop. Any weekend activities like hiking or day trips may be too much. And what if you feel like you both look and feel like crap and just the stress of even thinking about getting yourself presentable and putting on a good face is too much? It’s so much easier just to sink back into isolation because self-care and life period is enough to deal with.

FACE IT, YOU ARE HIGH MAINTENANCE 

If you are chronically ill it is exhausting being you, how much more so for those closest to you? I see how close family is affected by the ones they love who are ill, and it’s a horrible strain, especially when there’s no end in sight. But these people already know and love us. It takes a long, long time for new friends that come in to my life to “get it”, even the ones who are sweet and understanding have a hard time grasping that what are normal activities for them, even their daily routines, are not apart of my life and not possible. It takes people time to see that while your body may look okay from the outside it serves as your prison of pain and fatigue. 

But how would you approach a possible new partner with your life? (We are assuming that somehow you have made it past the first hurdle of actually getting out). I mean, I wouldn’t want to date me! I wouldn’t want to deal with someone who is always going to say no every time I ask if they want to go out and do something. I would get frustrated when I would want to talk and visit and they are just shutting down at the end of the day and don’t want to talk. I wouldn’t want to bend my life around someone who can’t eat out, can’t be active, would inhibit me at every turn.                       I wouldn’t want to be tied to a person who could never fully support themselves and who would drain me financially with medical bills. I would tire of all the health talk, all the time.

Run boys! You don’t want this.

YOU AREN’T ALL IN

I am not present for other people the way I want to be, a lot of the time I am exhausted dealing with me. I do try, I am an uber-communicator and reach out to others all the time and do the best I can to support others in their struggles and try and be diligent in prayer for my friends and family. But I can’t imagine having a spouse and trying to be there in the capacity that they would need. I may not be able to hold up my end in a household, or relationally. 

More than that when I am going through a hard time physically I am fairly aware that I go through not quite being myself mentally or emotionally as well. Whether it be more inflammation on the brain, or toxins or whatever, I am well aware that my ability to rationalize or consistently think clearly is affected. I also lose the creative and motivated sides of myself. So in a very real way I am not fully myself.

Back in December I went to hang out with a new friend one-on-one for the first time (just a friend) and later he said that he felt he had to drive the conversation. Firstly I was a little a nervous, but what he didn’t know was that although I was in a better cycle with my health,  I was in pain, and had some brain fog… That’s the worst because you are searching your mind with what to say, proper responses, and adding new threads of conversation, all the while using a micro machete to cut through cobwebs in your head. You may seem okay and even fully alert objectively, but they don’t know you are fighting through a few obsticles to put on a normal persona.

Friends that have known me a while can tell a definite difference between clear-headed me and me on the days things are foggy. You see if you don’t know me it looks like my personality is different. If I ever seem quiet and a little shut down its because I literally am, but it’s not my personality or choice. 

So how do you begin a new relationship like this? Well if you figure it out let me know.

IN CLOSING

So thankfully although I have days here and there of longing and loneliness, something broke in my spirit with this last round of ill health and I am no longer looking for marriage and family… It just doesn’t seem possible. Can God make it happen? Yes I know He can, and if He drops someone on my doorstep (and you know it has to happen this way because I don’t get out) that would be an unexpected joy.

So a shout out to my fellow U.I.I.S.’s, for now we will just hunker down, survive, take care of ourselves and (for me) serve God the best I can with what limited spoons I have. 

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❤️Facebook❤️ A Window To The World

Well love it or hate it we are over a decade deep now into the online social network that has taken over the world. And I wonder… What did we do without it? Yes yes I know some people still refuse to have a FB account, some people get frustrated and deactivate it, some people complain that it has taken the place of “real” interaction: And if you hate it that’s totally fine, because Facebook is highly subjective; It is made entirely of who you friend, what you follow, who follows you, what  you choose to post and how people respond, and visa versa.

 You want an online boxing ring? You got it; just post highly controversial and political stuff and rant and rave and argue with those that disagree. You want just a way to communicate with a few chosen friends and family members who you don’t see often enough? No problem; keep your circle small and keep subjects personal. 

This may be a slight over-simplification And I am not saying that this formula is perfect, or that negative things won’t happen in the FB universe, because they do to everyone at some point. For example, I got viciously attacked recently just for re-sharing a news story on a hot topic, I didn’t voice an opinion mind you simply shared a news piece… And someone who I hadn’t seen in person in years ripped me apart and actually called me human scum 😔 Wow. Needless to say that person is no longer my “friend” and has been blocked.

But getting to the point of this post: I opened my WordPress app lying in bed this evening prompted to write this because right now I feel like poo poo; Despite waking up late on a Saturday and taking a good two hours to “get rolling” I only lasted several hours before my body and brain just started shutting down and I had to go take my (currently) daily nap. I woke up and it was after seven pm and I’ve done almost nothing today and still feel too tired to do anything this evening. So (of course) I hop onto Facebook to see what the rest of the world is up to (I admit to logging on multiple times a day). But there they all are! Living! doing stuff! being normal… There is a picture of a friend’s new born baby. There is a post and picture of a friend’s new craft space. There are photos of a friend and her kids having a great day. There is a funny video of a cat 😆 Posts, upon posts, upon posts, of life happening. And of course for those that share my world, there are the Lymies; their petitions for prayer in their struggles, questions about new treatment protocols, brave self-videos letting it all hang out there publicly to raise awareness and/or to cry out for help, to ask for understanding…..    And after spending some time interacting, liking, reading, messaging  and sharing, I thought “what would I do without Facebook?” 

Over many, many years of illness and ups and downs (though focusing on the downs for the point of this blog) Facebook has been my window into life itself; I can’t even count the accumulative time that must add up into years of just sitting in my room, on my bed, isolated. I am here all the times inbetween working hours and (those up times when I get to do stuff with people) this is where I spend my life. In an approximate 10X10 room alone. 

I have heard personally from people who suffer from illness or just plain lack of funds how FB makes them bitter seeing all the “positivity” and observing other people always seeming to be doing things and going places. I have to admit before God worked on me in this area of my life I used to be horribly bitter and in a constant state of grief over everyone else who got their normal lives and got to progress through the normal stages of life while I seemed to be left behind in a time capsule, only it was the cruelest kind of capsule because life passed me by but I still aged inside with none of the benefits. 

Long story short, God did a work in my heart in repenting of grief, discontent and mourning and stop giving every new day over to negativity. I will quickly say that I do still have days like that, but they are no longer a state of being and they don’t linger if I give myself back to the Lord.

Where was I going with this? Oh yes, so Facebook has become my way of seeing and talking to my friends that I don’t often/never see and staying in touch with people that would otherwise be lost forever. Like That event I was invited to but couldnt attend? Well there on FB are photos of all my friends who were there and what happened. I can still feel a little apart of those things I couldn’t be at, and it is actually scary for me to think how dark my world would be without FB. 😱

You know what else? For the chronically ill community FB is nothing less than completely empowering! We have forums, we have pages, we friend each other, we offer support and love and help to each other in our suffering and offer empathy where no one else could understand. I think what is one of the most amazing aspects (when you are sick with something that is so hard to treat and misunderstood) is the openness of fellow illness sojourners and the sharing of new treatments, research, articles, new protocols, Doctor information…. It goes on and on. I have actually presented info to my own doctors that other Lymies have shared that they have used to help treat! This is actually how treatment and information regarding chronic Lyme is growing and moving forward; it is the power of the online community. Really! I have even had a doctor tell me that it’s the bloggers who are moving information forward with chronic Lyme.

Thanks to Facebook I have also made some dear fellow-Lyme, fellow-Christian friends. Dear sweet people some of whom I have even spoken on the phone with and prayed with. I have to say some of the dearest Christian women I have met are those that not only love Jesus but have suffered so much and continue to suffer. The difference is that they let their brokenness have its perfect result in self-refinement, stronger empathy, greater love and letting themselves be used for His purpose. 

So thank you Facebook; (ignoring all the hate and the arguing, the negativity and the stupidity, the vicious attacks and naive hatred…. )Thank you for letting us connect, for letting us share and be real, for being a platform for the chronically ill, for letting us see life happening all around us, for letting us support each other and lift each other up in times of crisis, and thank you for no end to funny cat videos 😸

And thank you to the people who use Facebook for good and not evil.