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!
Who feels like happiness and enjoyment that come your way are often accompanied with guilt because you're chronically ill??
I know I struggle with this REGULARLY, and so I'm here to tell you that you DO NOT have to feel guilty or ashamed during the rare moments of joy that bless your life when you're chronically ill. Lyme disease is an INVISIBLE illness, as are many chronic illnesses and disorders. We may not "look sick" 24/7, but you do not have to prove anything to anyone. What is "sick" supposed to look like anyway? I'll tell you that some days it's ugly, but some days life is good and those are the days that I must embrace in this journey. Pain and suffering do not have to be validated or believed by others in order for it to be very real, and very scary. And despite all of the pain and agony that I've faced in life, I've found that there is an awful lot of beauty and joy to be found as well; (it just may take a little longer to find than it does for the some).
So the next time you're having a moment of joy, gratitude, laughter, love, or happiness, EMBRACE IT! Don't let guilt rob you of what you are worthy of, which is immense love and happiness. Yeah, we're sick and in pain (sometimes more often than not), but chronically ill people also have a way of lighting up any room that they happen to be in.
Suffering is inevitable in life. You cannot avoid it, for it is often what shapes and transforms us into gold. But despite it all, God wants us to be happy. And through Him, we can find that happiness even in the midst of suffering.
Comment below if you can relate and tell me about your life's happy!
Let's talk about dating for just a minute. Dating, relationships, friendships, social outings, you name it; I guarantee that anyone can relate to feeling like their illness is CONSTANTLY third-wheeling it with them!
It's normal to feel different and want to spend most of your energy on hiding your differing lifestyle from your friends, dates, or even family at times. I've found that it's best to just be yourself, and if your illness happens to rear it's ugly head into a conversation or situation and people don't response well, then those people are not worth having in your life anyway. Illness and disability do NOT define you. It may make my life look a little unique. It may add a little sparkle to the conversation, but in no way does it determine your worth or your power in life.
Every single person on this planet has baggage and problems. Everyone has things that we are working on. Everyone has that something that third wheels it with them. I used to have to work on getting out of bed and walking across the room. Now I work on not letting PTSD run my life. Whatever it is, the important thing is that I keep aiming for healing, improvement, and joy. Chronic illness may be something that is often accompanied by stigma and fear in the eyes of many, but the truth is that chronic illness has a way of bringing out the strength and beauty in those who carry that cross. I may have Lyme disease, but Lyme does not take away the strength and spunk that comes with it. As is with all chronic illness warriors.
Comment below if you relate and tell me what character qualities you have that your illness will never take away from!
We live in a world of LABELS! We label EVERYTHING based on what we can see on the surface, and the reality is that the true depth of most people is found in their heart, which is something that takes time to see.
I've recently been having a difficult time navigating talking about (or not talking about) Lyme with healthy people. I've had so many experiences where it seems like the second I mention Lyme in a friendship or relationship, then the massive brick wall of Lyme disease is now placed between me and that person. This phenomenon of a Lymie's social life can often leave those of us who are suffering feeling alone and misunderstood.
While it's true that Lyme disease plays a huge role in my life and has sculpted me into the person that I am today, I promise that I live for more than just dozens of pills, treatment protocols, and eating organic. I'm not just the "sick girl" that needs help. I'm a girl that loves writing and singing. I'm a girl with the big heart that laughs a lot and has this deep need inside her to help those who are suffering. I'm the girl who's been beaten and broken down by the storms of life, but is in every way healing and striving every day to keep a smile on her face (even if some days I totally fail at it.)
The truth is that I will proudly wear the title of "Lymie" on my sleeve, but that doesn't mean that I'm not still 100% Claire. There is so much more to people who suffer from chronic illness and disability. You simply have to give them a chance. You are not the sum of your trauma, and you are not your illness. Most of the souls inside of these broken-down bodies are absolutely beautiful, and we must remember that as we interact with those who have walked different paths and traveled difficult roads.
Comment below if you can relate to having a hard time getting through the "chronic illness wall" with people, and what you do to remedy the negative labels that people can place on the chronically ill!
I'm a young single adult and I should be having the time of my life, right!? Not exactly...
I always find myself at a loss for words whenever someone asks me what I've been doing "for fun" lately! Not that juice cleansing, resting a lot, and Lyme treatment isn't fun or anything, but I'm pretty sure that's not the answer that most people are looking for.
The reality of chronic illness is that a lot of those who suffer in this manner do not have the energy or stamina to go out and have the kind of "fun" that everyone else is having. The reality is that a lot of us are homebound and we've spent countless time coming to terms with the fact that having fun simply means not being in pain for a day, or even for a minute or an hour. Lyme disease has often had its way of making me feel like "the flaky friend" or the "friend who never wants to go out." Almost every chronic illness warrior shares the same story which results in dozens of friendships lost and insufferable loneliness because so many refuse to just love a person in pain and stillness.
Let me get to the main point here: It's easy to be the "fair-weather friend." It's easy to stick around when things are good. It's easy to artificially love someone who always seems to be in the middle of an "epic adventure." But in life, there will ALWAYS be fire. And when that fire comes, those friends who only want you around without your burns and scars are really not your friends at all.
So here's a friendly tip to all my healthy friends: When you have a friend who is suffering from the heat of chronic illness, the BEST thing you can do for them is to sit with them in that painful space and JUST BE THERE. LISTEN. And offer LOVE and SUPPORT. You may not always be able to douse the flames of their life fire, but you can always help them bear the burden so they are not left to do it alone.
I am always amazed at the level of compassion that chronic illness warriors have for those who suffer because they've felt the burn themselves. May we all strive to have that deep compassion and love for the sick and afflicted.
Comment below if you've experienced the loss of friendships because of your illness and what you need when you're in YOUR life fire.
Okay, obviously this is a little exaggerated but how many of us in the chronic illness community often feel like an alien from outer space compared to everyone else who is healthy?
I often find that there are so many things I have to do to make it through the day that other people don't, and it often makes me feel isolated and weird. I take pills when I wake up, at breakfast, at lunch, at dinner, and before bed to manage my health so I can function. I have day time pajamas and nighttime pajamas for the days that I'm bedridden. And although I may not be on a gluten-free, dairy-free, sugar-free, paleo, keto, vegan diet.... I often find that what I choose to eat (or not eat) can often make me feel separate and different than everyone else even though I do it for my health.
My point in this truth is this: DIFFERENT is not bad. Literally, everyone has their own quirks and idiosyncrasies. Maybe I have more than the average person, but that doesn't make me less of a person or less capable of living a full life. If you spend your day on IV's, taking pills, sleeping, eating healthy, and lounging in pajamas because normal clothes either cause pain or severe itching IT'S OKAY! You're not "weird" because of these things. In fact, it is the depth of our differences and the strength behind the differences that give those in the chronic illness community great beauty and elegance in how they live their lives. It's important that we all strive to remember that and to increase love and understanding, and decrease false judgment and ridicule.
Comment below if you can relate and something that you do as a chronic illness warrior that makes you feel different!
One of the greatest frustrations of the chronic illness community is when people assume that you're "faking" your illness for attention. Let's be real here: There is no way that a community that takes up almost 50% of America is all faking it. You're right, I don't look sick! But that's mainly because I spent two years looking sick on a constant basis, and who wants to look sick all the time?
There is an immense amount of truth in the phrase "Fake it till' you make it." And for the most part, I have to try to live life to the fullest and have as much happiness as I can despite the chronic illness. That desire and constant striving doesn't downplay how much pain I've experienced, or the constant battle I fight just to be able to get up and going each day. Some days are better than others. Some days awful. And some days are just plain frustrating! But that doesn't mean I'm going to give up any time soon.
Everyone's chronic illness life looks a little different as we're all striving to reach a point where we don't have to fake it anymore. But in the meantime, we strive as hard as we can to continue forward (even if that means spending a day in bed). And that's what makes each and every chronic illness warrior strong and resilient. We don't quit even when we're in the middle of the fire and feeling like we're being burned alive. There is grace and resilience inside of every chronic illness warrior, and that is something that we all must be reminded of.
Comment below what "faking it" looks like for you and how you manage to live despite the illness!
I'll never forget when I was at my worst and I would start my morning off with a handful of supplements and oils! I used to joke with my family about how I couldn't possibly see how there was a need for breakfast after taking so many pills! I still take quite a few supplements, but nothing compared to the 20 different capsules I used to take three times a day!
I think when you're healthy and strong, it's common to take for granted so many things in life! Since I've been chronically ill I've realized there are so many little things I have to do every day to be able to function, and it blows my mind to think that I used to exist without supplements and essential oils when I was younger!
Being sick has definitely taught me not to take the little things for granted, because someday you may not have those things, or someday you may find that you have to add a lot of extra and difficult things to your routine in order to survive. The chronic illness community knows exactly what I'm talking about, and this is your friendly reminder to take time to take care of yourself every day. Because if you're chronically ill, self-care is crucial to survival. And if you're healthy, you won't realize just how crucial, until you're chronically ill!
Comment below if you relate to taking exorbitant amounts of pills, and comment other ways that you practice self-care!
It's very common for someone who suffers from neurological Lyme disease or any other chronic illness that affects the nervous system to experience intense anxiety. It doesn't matter if I'm falling down a stair or if I'm falling off a cliff, it all feels the same to my Lyme riddled nervous system!
I often feel like I experience and feel things much deeper than the average person and wonder if this deeper awareness of things is a blessing or a curse. I remember when I was at my worst, my heart constantly seems to be pounding out of my chest, and I often felt like I had little bugs crawling under my skin. This constant feeling of distant danger would follow me everywhere, and these feelings often made me feel completely incapable of finding peace. I still have times when I feel desperate for the relief, but I've now learned and continually practice coping mechanisms for this intense anxiety.
I find my head spinning often about how I'm supposed to feel or react despite the fact that I have this hypersensitivity to my surroundings. I'm supposed to be happy, but not get overly excited. Hopeful, but refrain from getting my hopes up. Grieve and process emotions, but not for too long or too deeply. These mixed messages of how I'm supposed to feel do not help with the healing process and doesn't promote self-love or self-care in the least.
I've found that it is possible to find peace in this illness by grounding myself and shutting some of the voices around me off. Peace comes to me through daily meditation, and connecting to the earth and to God. It may seem impossible to find peace in an overly anxious body, but it's possible as we take time every day to heal our bodies, minds, and hearts.
Comment below if your illness makes you feel hypersensitive, and how you find peace through it all!
I literally just had a conversation with my brother that sounded just like this! I was chatting with him on a day that I didn't feel well at all, and he was telling me about how sore he was because he was playing basketball the night before, so I thought I'd be clever and respond with that! It gave us both a good laugh!
Anyone who struggles with chronic illness knows that existing in a broken down body can often be discouraging and make you seem obviously separate from everyone else. What inflicts a minor amount of pain on the average person often leaves me bedridden for a few days, as is with the rest of the chronic illness community. It's important to be sensitive and compassionate towards others no matter what, simply because you never know the inner batter that someone else is fighting.
I also want to point out that I often see a lot of posts on social media about longing to be like everyone else and have your life back again. The reality is that even when you are healed from this plague that is chronic illness, your life will not look the same as it did before you had the chance to experience the depths of this kind of pain. You'll be a different person who has grown and changed, and it's a beautiful change, not a bad one.
So it's okay to be different. It's okay to sit down in situations where someone who was healthy wouldn't. It's okay to say no to certain foods at social gatherings because you know they'll make you sick. It's okay to have bad days, and it's okay to be different than the rest of society. Being unique doesn't make you weird. It makes you absolutely beautiful! And that beauty is something that will penetrate into the hearts and minds of the right people with time. So live life to YOUR fullest, not everyone else's. And embrace being a little bit different. Because normal has always seemed awful boring to me anyway!
Comment below if you agree and how your illness makes you feel different but beautiful!