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!
How many of you feel like you spend half of your life explaining your illness to people who don't believe you?
Let's be real here, a lot of us have experienced reactions from people about our illnesses that often lead to negative thoughts about ourselves and our struggles. I've often found people making the above comment after I've already explained my illness to them multiple times. Either that or it's usually followed by silence, lack of knowing what to say, repeating the words: "I'm sorry" or the famous line of: "I can't even imagine!" While all of these are not necessarily offensive things to say, they can make someone who's already struggling enough often feel like they're just a massive burden or like they're just crazy.
If you respond with a statement about how you didn't know when I've already opened up to you about it, it tells me you weren't listening or you didn't believe me. If you respond with "I'm sorry" followed by silence I often feel guilty for talking about it at all because I was never seeking for sympathy.
So what is the chronic illness community looking for as a response? Well, first of all, I understand that nobody is truly going to understand what it's like unless they've been through it themselves. But you don't have to completely understand to offer love and compassion to someone who is suffering.
When I trust you enough to talk to you about it PLEASE LISTEN. Follow up "I'm sorry" with reminding me that I'm not alone, I'm loved, and I can do this. Offer words of encouragement and hope. I need somebody to fill my painful space with love and compassion, not rejection and astonishment. May we all try harder to respond to anyone's struggles with greater kindness and love.
Comment below if you relate how you would like others to respond when you open up about your 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!