Or the modified version: Who knew that everyone would join me in isolation!?
My face in this pic perfectly illustrates how I feel about the current state of life and the world! Oh, the irony of it all for someone who is chronically ill!
I started taking small baby steps out of my house and living more like a "normal" young single adult about a year ago, and even then I found it terribly difficult to fit in and be "normal" after 3+ years of being mostly home-bound due to Lyme disease.
The truth of the matter is that when you have an illness of any kind (even if it isn't contagious) people don't want to be around you because it's completely unknown and very scary at times. I found it incredibly difficult to find a friend that I could really count on, my social life was non-existent for the longest time, and whenever I expressed how lonely or suffocatingly bored I was, nobody seemed to understand, and nobody wanted to understand.
So, there's a part of me that wants to say to everyone that "corona-virus is all in your head, you're using it as a crutch, you just need to stop being lazy, get a job, and do yoga and you'll be fine!" just like I was told by countless amounts of people. But, the truth is that those comments hurt and are completely false to those who are suffering from any severe illness.
So... I'd invite you all to take this as a time to instead be KIND.
Illness has a way of bringing out the pure selfishness in people, or the pure love in people. The good news is that YOU CHOOSE which one it brings out in you. I never had any "tips for isolation and quarantine" articles floating virally around the internet when I took my first steps into isolation. And so, with those lessons learned, my tip to you would be to use WISDOM at this time.
Isolation is something that will kill you long before the illness will, and many people that I've seen die of Lyme disease died because they gave up because they had nobody. Because fighting a battle without helping hands and a team of people that love you is very VERY difficult.
Remain close to those you love with all the resources we have at this time because that's what will get us all out of this place that we're in.
Sending you all love, hugs, and support during the COVID-19 crisis!
Comment below if you relate to this!
I call this little phenomenon of the chronically ill, "The Pain Cycle." Tell me if this sounds familiar:
You just got through your last pain flare, and things are looking up. Maybe you go a few days... or even a few weeks... or if you're really lucky a month or so with low pain levels, and then *BAM!* Right back down where you started with more of that familiar friend we call pain. Especially with Endometriosis, this is a hard battle for me because I can always feel a big flare coming a few days before and the fear cycle that accompanies this is very real.
I've done this for 5 years, and although I see much improvement the pain game is tricky, frustrating, and makes me worry seemingly endlessly!
So, if you have a friend who suffers from any form of chronic illness or chronic pain, compassion is key. The best thing you can do to help stop this cycle is to get them out of their head. Talk them through it. Go on a walk (even if it's short and slow). Listen. Be there. This is a normal thing to experience when you're chronically ill, and we simply need people to walk the hard road with us, ready to help when we fall back to another flare or let the fear of an oncoming one interfere with daily life.
If you find yourself in the pain cycle like I so often do, remember to ground yourself and stay present. Remember that your pain doesn't define you, but your resilient and enduring spirit does. Don't give up and remember that there is always hope and happiness ahead!
This is such a COMMON MISCONCEPTION about chronic illness!!
I am finding myself escaping judgment like this the more I discover healing and am able to do more things. But, for the first 3 years of my Lyme journey when I was home-bound and bedridden, I received many comments about how lucky I was to just lay around at home all day.
To this day, I still receive comments about how my illness gives me "so much more time." That's just simply not the case.
Whether you're chronically ill, or healthy as can be, managing time is something that everyone has to learn. And an illness adds extra to the list of to-do's and compels one to re-prioritize.
It's a DAILY, CONSTANT battle.
Daily routines that if I don't do I'll be sicker than I already am.
Chronic illness doesn't make life any easier just because I can't hold a full-time job or go to college full time. It's not a constant vacation, and it's not an excuse for me to be lazy. On the contrary, it often adds to my life because I have to work twice as hard to acquire QUALITY of life.
Don't assume that anyone's lot is easier than yours. Instead, offer compassion and love. I know I have it easier than some of my other chronically ill friends, but that still makes me journey hard for me. And through the hard, I'm learning how to ask for help and rely on God and the people who love we me the most to give me the daily love and help that I need. We are all learning how to do that, and we will be a lot more successful as we work to encourage and help one another through it all. Asking for help and not being able to do "normal" things is nothing to be ashamed of. My story looks different than the average young person, and that's okay. My job is to live life with this illness to the fullest that I can manage.
Comment below if you relate, and remember that taking time to rest and do treatment is nothing to be ashamed of!
It is one of those weeks where I feel the tired vibe very fiercely, and I've been praying hard lately for strength through the weariness.
I believe that everyone can relate to this in one way or another, so you would think that this isn't something that is commonly misunderstood. Everyone knows what it's like to be tired right!? Well yes, but there is a difference between being tired, and being BONE tired from fighting the good fight for years and wondering if you will ever have a month or a year free from the pain. I regularly have to remind myself that when someone tells me they are tired it is, more often than not, a cry for help.
I learned this week that there are simply times in life when sleep isn't necessarily the remedy for this form of exhaustion and weariness. Oftentimes LOVE is what can invigorate a wearied soul.
Never underestimate how far a phone call, a hug, a hand to hold, or a kind word can go to someone who feels weary. I will always be a firm believer that love conquers all, and so in our moments of pain or healing may we all be able to offer a healing hand to those who are incredibly "tired."
Comment below if you can relate to this form of being "tired" and what helps you get through it!
"I feel like I have no purpose!"
I've listened to myself and others express this many times throughout the chronic illness journey, and it's time that we bust this myth that the chronically ill have no purpose simply because their lives look different than the average person.
I recently had someone close to me express how they were so excited that I was opening a gift shop because I would now "have some purpose." As if I haven't had purpose for the past five years of my life... On the outside, it may seem like I don't have a purpose. I spent 2+ years in a bed, home-bound, and unable to really DO anything. But there's a whole side of chronic illness that is just not seen.
I may have spent 2+ years home-bound, but I also spent my time participating in grueling treatment protocols, resting, and HEALING. I invested my purpose is growing my heart and my mind. And because of that, my entire purpose for life shifted.
Yes, I don't have a 9-5 job. Yes, I live with my parents. Yes, I've spent a lot of adulthood in pain... but through it all, my heart was growing in love, empathy, patience, and hope. Lyme has instilled in me a deep passion to advocate for the sick and love the afflicted. Lyme disease did not rob me of my purpose, it clarified and expanded my TRUE purpose. Lyme disease softened my heart and helped me discover who I am truly meant to be, and it continues to do that for me every day!
If there is anything I can say to the Chronically Ill it's this:
You have worth!
You have purpose!
You have so much to give and offer!
It simply takes time to know and understand that shift that is taking place inside you. May we all be content and patient as we discover our purposes through all the suffering.
Every time I see this meme floating around the chronic illness community on social media I can't help but laugh out loud, mainly because it's so true that it's funny!
This Chronic Illness Truth applies to anyone who has a chronic illness that affects their joints, or even just anyone who is home-bound because of their illness. I really want to focus on the aspect of being homebound for a minute here...
I am a young, single adult that lives with my parents and I live in a household of all sick people. My parents and I have chronic Lyme disease, and we survive this illness by working together and yes, we spend a lot of time at home because we're too sick to go out, or if we do go out we pay for it later.
With this situation of mine, I always find it very frustrating to receive comments from people about how "I don't put myself out their enough," or "I just need to get out more!" This truth is important in order to demolish the stigma.
I am not a recluse that doesn't get out enough. Those who have chronic illness are sick to the point where there are days when leaving the house is unhealthy for us. Those of us who are home-bound are often in pain and managing to the best of our ability, and if you do happen to see us out we're either having a good day, or pushing through pain, or both!
So my message today is to REMEMBER. Remember to call the friend you haven't talked to in a while. Remember to invite us even if we can't make it. Remember to be present in our lives just like you would any other friend. It may difficult for us to navigate this illness, but we still intend to live a full life and we still need love, just like everyone else.
If you're home-bound because of chronic illness... you are still of great worth. Never forget that.
Comment below if you relate!
Okay, I realize that we haven't had Thanksgiving yet... and it may be a pinch too early for Christmas posts... but I've been thinking about Christmas since June so I'd say it's time!
I've always thought that there was something so enchanting about making wishes. And although I've never been one to think that success or happiness comes from a mere wish... that has never stopped me from wishing on a star, or tossing a coin into a well. Birthday wishes always make me smile, and Christmas wish lists always seem to grow in my head this time of year. But the funny thing is the transformation that has taken place within my wishes as I grow older.
As a child, my Christmas wish always seemed to be for the newest Barbie or the latest pair of shoes. As I got older, I always wished for a "boyfriend for Christmas" or "my one true love." And now my wishes always seem to be for less tangible things: things that are obtained through heart and hope. And although Santa may not be able to bring me a cure for Lyme disease (anymore than he can stuff a good man in my stocking...) I do know that Christmas is a time for miracles, and God has blessed me with many a miracle not only around Christmas time but all year long.
So to those who are wishing and hoping for healing this time of year: remember that healing comes one step at a time in the simple precious miracles that can be so easily missed until we take the time to look back and see what was happening all along. Healing, hope, peace, and joy are things that God intends for all of us to experience as we press forward with faith. Christmas can be a difficult time for those of us that have been stripped of many things through trial and trauma, but this year I pray that your heart will be full and your body will be at peace as it continues on it's healing path. May we all hold on to our hope and experience pure joy as we enter into the Christmas season.
This truth is for all of my single ladies! (Or should I say... single Lymies!)
It's no secret that a lot of people my age are out dating, getting engaged, getting married, and so on. It's also not a secret that I follow lots of chronically ill moms on social media because they inspire me and I aspire to be in that place someday. But alas, it also isn't a secret that chronic illness tends to put a damper on dating, and in my experience can sometimes have its way of extinguishing one's dating life altogether!
But I'm not sharing this truth to write my lament of a single Lymie... I'm sharing this truth because, in a world where I constantly feel the pressure to date and not be single, I sometimes think it's okay to be single for the time being.
A relationship is not a prize or a gold star that you wear on your sleeve. The person you love should not be a status that makes you look good on Facebook or Instagram, but rather love finds you with God's timing. And in the meantime, every individual has immense worth and potential on their own.
It's no joke that Lyme disease is usually the deal-breaker with many men, but it's also a truth that I'm grateful to my Lyme for weeding out the liars, the users, the shallow, and the ones with all the wrong intentions. Life gets very real with me very fast because of my illness, and every guy I've ever dated always seems to know that the second the words "chronic illness" escapes my lips. So it can get discouraging, but it doesn't take away my abilities to do incredible things while I patiently wait for God to send me the man that will support me in my illness just as I plan to support him in whatever comes our way.
So exercise patience. You are lovable, even with an illness. And you are incredible, no matter your ability... or disability in this case... True love comes in the right place at the right time, and in the meantime, Lymies and other chronic illness warriors can always choose to live their best lives. Thriving is always possible, in sickness and in health.
I have been learning this profound lesson about happiness lately and this is it:
God wants ME to be happy!! Not just everyone else, not just healthy people, not just people who seem to have it all together, but ME. Little, insignificant, sick, tired, and sometimes a little bit crazy ME.
For the longest time, I felt like I wasn't supposed to be happy. Like if I was happy it meant that I wasn't being refined enough in life, and I should be in pain because that's how I'm going to learn the hard knocks of life right?! WRONG. As necessary and as unavoidable pain and suffering are in this life, the end goal for each of us is still pure joy. Illness for sure has a way of refining you, to which I am thankful for those painful moments that teach me amazing lessons, but because I have Savior who empowers and a God who LOVES me, I know that I can find happiness despite my circumstances.
Don't get me wrong, in NO WAY is this always easy, but if you're in that place of darkness right now I BEG OF YOU; please don't quit. Please carry on. Please put on your extra strength and remember that pain is not meant to last into the eternities. It is meant to refine us in the here and now, and WE WILL GET THROUGH IT. God is bigger than us. And He can and will ease our pains.
This phrase is used pretty frequently in my house: "We'll take care of you, but we won't feel sorry for you!" Sounds harsh right? It may sound a bit harsh at first, but when you live in a house with only chronically ill people, you learn really fast that if you waste time feeling sorry for each other you never get ANYTHING accomplished in a day!
We all know the reaction of "I'm so sorry!" that chronically ill people commonly receive from others. I always feel minorly guilty when someone tells me how sorry they are that I suffer from chronic illness, mainly because I'm not sorry. I won't downplay how difficult chronic illness can be. I won't downplay the trauma, the dark nights, and the excruciating pain... but through it all, I've found that I just don't have the time to be sorry about it. I talk about my illnesses the same way that any other person my age would talk about college or career because it is such a big part of my life. I mention it casually in conversation because hiding it can be exhausting, and I talk about it all the time because raising awareness for such realities is SO IMPORTANT because I believe in hope for the chronically ill.
With that said, chronic illness is a PART of me. That does not mean that it defines me or makes me any less of a person or any less capable. I may have certain disabilities that can make life a little harder. I may fight every day. I may face darkness that others don't have to, but I do all of these things unapologetically because self-pity will ultimately get me nowhere.
So when someone opens up to you about their illness or deep dark sufferings, tell them you LOVE them. Tell them you BELIEVE them. Tell them you are HERE for them and you're NOT LEAVING. "I'm sorry" often silences conversation in this context. Say you're sorry when you've wronged someone. Don't say you're sorry because you don't know what else to say. Illness is for sure a tragedy. But every single one of us is currently learning to transform tragedy into beauty, and pain into healing. We are all simply looking for people that are wiling to help us along in this journey.
Comment below if you can relate and what you'd prefer people say to you when you open up about your illness!