Katiuscia Maria

We all know that setting boundaries in our lives is crucial to our personal growth. I’ve spent the last 12 years in therapy learning how to create them, along with learning about myself. §Having set boundaries in life is a way to measure limits — the least and the most of what you will and will not accept. Think of them as setting life standards. The same description can be applied to every aspect of your life because, in order to have healthy relationships, boundaries are necessary. Aside from interpersonal relationships, this also includes your relationships with work, food, exercise, time, money and space. Above all, setting boundaries is a form of self-respect. With interpersonal relationships, if you are a giving person by nature, you experience joy and fulfillment when you give to others. But what happens when you are giving to someone who only knows how to take? If you are constantly giving, you are being tapped emotionally, and you need to be replenished and refilled. If you don’t, you will reach a point of emptiness and it will be impossible to give as much as you once did. You risk burning out and hardening yourself in order to survive. More importantly, you cannot continue to give from an empty cup, and there are people who don’t know when to stop taking. As someone who has battled lupus nephritis for the past 22 years, I have always wanted to help others who struggle. I’ve experienced serious struggle with my chronic autoimmune illness, and I’ve seen darkness, but I’ve persevered. I want to encourage and inspire people who are going through similar struggles to keep pushing, fighting and believing things will improve. However, I’ve learned over the years that as much as I aspire to help others, they have to want to be helped. I’ve met people who, no matter what I’ve said or how much I’ve tried to help, they seem to have wanted to stay in the same place. They preferred their life of complaining and dwelling on the bad instead of trying to make a positive change. In those situations, I had to walk away and accept I could not do anything to help those people. With family and friends, I used to be someone who always helped and went out of my way to help, no matter how I was feeling. I used to think if I shifted my focus and did for others, the pain wouldn’t affect me as greatly. When I ignored and pushed aside my own pain to please others, however, things got worse for me. I needed to step back and think of myself and what was best for me, instead of trying to help everyone else. Even with family and friends, we need to set limits on how much we can give, and how much we can physically and emotionally take. We will experience loss of many relationships throughout the course of our lives, some unexpected and some by choice. We lose family, pets, friends, jobs, people we love, money, and sometimes we can lose ourselves; that’s the worst loss of all. In learning to set boundaries in my own life, I’ve walked away from people and situations that no longer served me. I have walked away from situations and changed my outlook on life aspects I knew would have a negative impact on my well-being and health, whether it was diet or fitness regimens, negative job dynamics I found myself in or stressing about things that were out of my control. If I found I was in danger of losing myself because of certain actions, I quickly shifted mindset and went down a new path. Nothing is worth losing ourselves over. For me, recognizing and implementing these boundaries helped me focus on what was important and learn to let go of what wasn’t. They taught me to avoid the bare minimum and the extreme. With people, I know I cannot save anyone; I can only save myself. I can’t tell people what to do, what steps to take with their health, what choices to make. I’ve spent years working with my own medical team, learning through therapy and focusing inward to try to figure out my own steps. The simple truth is we cannot rely on others to save us, show us the way or give us the answers. The steps to achieve what we seek are ours, and ours alone. We achieve that which we seek by setting up proper methods and ways, as well as boundaries. We learn from recognizing what we will and will not accept, how far we are willing to go and when we must stop. In the pursuit of goals, giving up does not always mean failure. It means we’ve exhausted every option, asked for help and understood it’s not conducive to our growth to continue on in the same manner. It means following the standards, the boundaries, we have set and accepting there is nothing left to do and we have nothing left to give. Every aspect of our lives, every relationship, should be subjected to the standards we have set to promote our growth, interpersonal relationships being the pinnacle of what we think of when we think of boundaries, but also every other relationship we face with intangible aspects. Most important of all, remembering to recognize the most important relationship we need to focus on is the one we have with ourselves. Remembering we cannot give from an empty cup, remembering to prioritize our own well-being and health, and living by the standards we have set. A version of this article was previously published on Medium .

Chronic pain is something that millions of Americans live with on a daily basis. I am one of them. I’ve been living with an autoimmune chronic illness for the past 21 years, and with that has come chronic pain. It doesn’t matter what is going on in life, or whether my lupus is in remission, pain is simply part of my “normal.” The reason you would never know this about me is that it’s extremely rare I say something about it. I choose to suffer in silence because I don’t like to complain. I don’t want to be that person or grouped in with people who are known for complaining (because we all know at least one of them). I don’t want sympathy or special treatment, and I don’t want people to feel I’m dumping my issues on them. Years ago, I learned the importance of setting up boundaries in my life with people and situations. But pain is something I put the wrong types of boundaries on. I’ve always pushed through to keep a commitment, to put on a show that all was fine, to not let people down, not realizing that pretending things were fine was probably more detrimental because I wasn’t being true to the reality. When you live with chronic illness, you never know how you’re going to feel waking up each morning. Can you function, can you move and progress through your normally scheduled plans? And ask yourself this: have you figured out your breaking point, because we all have one, and the more we try to ignore it, the more it will build up and cause stress inside us. I accept that every day is a day with pain. What varies is the level, and it’s that level that determines my moves for the day. And although I choose to rarely discuss it, it doesn’t mean I’m not experiencing it. It just means that my perspective is different from that of many people. Things could always be worse than the hardest struggles, and the reality is that they can always get worse. My standard has always been that if I hit anything over a 12 on a 1-10 scale, I say something. I recently went through a period where my pain was so high, I hit that breaking point and was emotionally broken. I battled depression, the inability to be productive, the sadness, the mental turmoil. It was never a question of “why me,” but more of a question of “when will this pass?” My doctors tell me not to be a martyr, that there must be something that we can do for pain management. It has nothing to do with being a martyr because again, I don’t want sympathy. I choose to not say anything because I don’t want to be looked at differently. And medication I’ve tried in the past just hasn’t seemed to work for me. I think sometimes when we battle these  invisible illnesses and are suffering, we always have a risk to become insecure about the way other people think of us. I don’t ever want to be known as someone who always has something to say, someone who burdens other people with her problems, because here is the hard truth: no one truly cares about our problems, and we shouldn’t want them to. We are all going through some kind of struggle in our lives, facing some form of challenge, carrying our individual crosses. And how many times do we choose to keep it to ourselves, to hold it in and not say anything because we were concerned about how we would appear to others? More times than we will care to admit. On the other hand, how many times have you been the recipient of someone who just won’t stop complaining, unloading their problems on you, expecting you to be able to either say something that will make things all right or just share in their misery with them? I’ve been that recipient too many times. I have learned that there is a difference between “dumping” your problems on people and “sharing” them with those close to you. Dumping is unloading them onto someone else because, in a way, it lessens your own personal load. But your problems should not be taken care of by someone else. More importantly, that someone else has problems of their own, and now you expect them to carry yours. Sharing, on the other hand, is confiding in people who love you and letting them into your life. Sharing is vulnerability, and I’m still learning that there is no shame in it. I silently struggled with thoughts of being a burden which was a reason I didn’t want to overshare. But I’ve learned that those who love me, want to know what’s going on in my life, they want to be helpful and present through my struggle, and it is up to me to remember that they want what’s best for me. Life with any chronic illness ebbs and flows. You go through good and bad times, and find the methods and means that help you cope in the healthiest manner. I’ve always turned to writing or meditating at the beach with my dogs to help me through those times, but we all find things that speak to us. We get through struggle when we recognize and acknowledge what is causing the struggle and make the attempts and effort to adjust things in our lives. If the struggle is due to something we cannot change or have no control over, then we learn how to adjust our minds. The most important thing to remember is that life happens. And sometimes, it really is OK not to be OK. Because amidst the struggle we go through, we need to remember that we’re going to get through it, no matter how much time it can take, that this struggle is merely a moment in the grand book of our lives. That life, even a life with temporary pain, is too great of a gift to give up on. And mainly, that no matter how great your struggle may seem, try to stay hopeful through it all… because this too shall pass.

It started with random twitches when I was 13. I’d had a traumatic experience a couple months before the twitches began which I never discussed with anyone. It took a couple months of testing to figure out what was wrong, and doctors initially thought leukemia, but with more testing, the final diagnosis was lupus. Within a month, nephritis was added. My chronic illness has given me plenty of challenges, plenty of situations I wish had gone differently, but it’s also given me a constant attitude of gratitude. I’ve been blessed with another year of continued remission from my 21-year battle with lupus nephritis, although that doesn’t come without symptoms or side effects. Unexplainable health issues, being that select one person in a statistic and constant pain will always be present in my life, remission or not, courtesy of being autoimmune. The truth is, any chronic illness, especially autoimmune, can never truly be completely silent. Being autoimmune just means you’re completely open and vulnerable to anything and everything that can affect you. This means a normal cold can last you over a month, or turn into pneumonia. This means that a small paper cut or knick on your leg from shaving can take weeks to fully heal. This is also why many people with one autoimmune illness tend to develop additional illnesses as well. These things are expected, these things are part of life with an illness, right? Know what else can be part of life with an illness? Paranoia. The underlying paranoia that resides deep down within me. I can say I’m totally fine, I can believe that random symptoms don’t cause me to overthink or worry that my disease is flaring or something else is going on. But the paranoia is there, no matter how much I try to avoid or ignore it. For me, the paranoia struggle is real when I go through periods where I begin losing an abnormally large amount of hair. That was one of the biggest symptoms for me when I went into a major lupus flare back in 2009, so losing hair today makes me relive all of that fear. That paranoia, that fear, is valid. I don’t let it consume me, but it is still there. But unlike 2009, my disease is not active now, and I’m in my fifth year of remission. So when I do lose my hair, I look at everything that’s going on in my life as a whole. Am I under stress? Am I lacking something from my diet? Is this something I can control, or a symptom of something that is out of my control? My underlying paranoia is there before taking blood tests or meeting a new doctor. It’s there when I go in for an MRI or scans, if I change my medication, or if I undergo traumatic stress. Because I know that with just one off marker in my blood, one new treatment plan from a doctor, one questionable scan, new meds or stress, my life can dramatically shift, causing all of my progress to be put aside. I recently had to take full blood tests to check up on my lupus and kidneys. I’ve had a few months where I’ve felt unexplainably off in some ways, so I had a small worry that something wasn’t right. Maybe it was stress, maybe it was trying to do too much all the time, but whatever the reason, a little worry was lingering. The tests came out perfect, and I bawled when I hung up with my doctor. Thankful to be in #RemissionYear5, thankful to be able to continue this healing journey, thankful to connect with others and bring them hope. As much as no one particularly enjoys getting blood tests or scans or meeting with doctors, these moments for me are moments of growth. They are the moments in which I am reminded that the only things I have control over are how I handle what’s presented to me and how I choose to move forward. They are the moments that remind me I am exactly where I’m supposed to be. The moments that comprise each chapter of my life. Over the years, I am constantly reminded that my personal struggles have made me who I am, and I’m thankful for all of it. Our lives are made up of different moments, chapters and experiences. Each trial and triumph is unique. Each illness, symptom and reaction is different. Acknowledge any fear and paranoia that is present… but do not let yourself fall prey to it. Remember to not let the challenging times overlook the good times. And although your illness is a part of you, you are not your illness. But most importantly, never forget that you are strong and so much more than a chronic illness.

In closing the chapter on another year, I always find myself reflecting on what has passed, and thinking of what I need to change, or what to implement. I don’t think of a bunch of “New Year’s resolutions” because life with a chronic illness is too unpredictable. You can’t really promise that you’ll go to the gym every day when you never know how you’ll feel in the morning. I use the theme of resolutions as an aid in my reflections. Motivation is at an all-time high in the beginning of the year with people wanting to change what didn’t work for them. What most of them fail to recognize is that those changes, the things you desperately want to do differently, can happen at any point in your life, not just January 1st. For those of us living with chronic illnesses, we see things differently. We want to make changes desperately and embark on a new year with the same optimism as our healthy friends, but all of our big aspirations have turned a little more realistic. Sometimes all we want is one day. One day where we don’t struggle to get out of bed, where we have no pain, where the simple things aren’t so challenging. Chronic illnesses teach us that there isn’t much we can control. For me, I’ve learned I can’t control my disease, I can’t control the pain I experience and I can’t control a flare. Nor can I control my depression that comes and goes. I can’t just “snap out of it.” But what I can control are the choices I make to cope through hard times. When bad things happen, I’ve learned to shift my focus, and try my best not to let them bring me down, remembering that through struggle comes understanding. Through struggle comes self-discovery. So in the new year, I’ll continue to strive for wellness in the best way I know how. I’ll continue to fight, to love (myself above all), to give and to speak out about my struggles, knowing my voice will bring comfort to others. And in terms of “resolutions”? These are the three things I’m choosing: I Choose Acceptance. Acceptance of where I’m at in this moment, and appreciation of where I’ve been. Accepting myself as the beautifully unique, imperfect being I am. Accepting that my illness just is, that it does not define me, it never has, it never will. I’ll remember that I am a fighter and warrior, and that I am so much stronger than I sometimes think. I Choose Awareness. Listening to my gut, recognizing the things that don’t contribute positively to my life and eliminating them. Whether it’s a situation that causes me anguish, or friendships or relationships that have turned toxic, I’ll free myself from that negativity. I’ll be more aware of how things make me feel, and focus on my mental and emotional health. I’ll do more of the things I love: more journaling, more yoga, more mindfulness, more rest time. I Choose Growth. More searching to find the lessons through all of my struggles, searching to find the reasons behind the emotional pain. Gaining the understanding of how things make me feel and how I react to them. I will take the constructive criticism and strive to be better than the person I was yesterday. And although it seems cliche and unfair, I’ll remind myself that there is always a reason for why things happen. So I will do my best to learn and accept all of it, remembering that those struggles, those hardships? They have made me who I am. We want to hear your story. Become a Mighty contributor here. Photo via alexkich on Getty Images

My lupus went into remission right before my 30th birthday, and I’d spent the 16 years leading up to that day fighting the illness that wreaked havoc on many aspects of my life and health. Getting diagnosed at 13-years-old was challenging, not just because of the diagnosis itself, but because the teenage years themselves are challenging, and yet, they are the years that help shape your adulthood. My diagnosis and everything that happened in those first few months shifted my entire life, and I’m thankful my teenage years indeed helped shape me into the person I’ve become: strong, empathetic, determined, and always grateful. However, the past few years, I’ve become aware that I experience “seasonal depression,” which comes in waves in different life seasons, or actual seasons. Unfortunately, it has become quite normal that I never know when this depression will strike. I strive to live a positive life, surrounding myself with good hearted people, and trying to stray from negativity. I’ve found ways over the years that help me emotionally cope and thrive, but I’m human, and I have my moments of feeling emotionally lost. I’m still learning that it’s OK to feel lost sometimes, that I don’t have to prove to anyone that I “always have it together.” My remission came after struggling in a hopeless four-year flare where treatments weren’t working, kidney function kept worsening and I was either homebound or in and out of the hospital. With remission I felt that at 30-years-old, I was finally able to begin my life, but I wasn’t prepared for everything that came with that. I wasn’t prepared for all the emotions, the fear, the limitations that came from the fear. I remember thinking so many times, “I can’t do that because of my lupus, or kidneys.” It took a couple years to settle into this newfound health, and keep fighting to build myself up and continue to get stronger and healthier. The fear and limitations were set aside, but the emotions have lingered. I have moments where I am emotionally down, and can rarely pinpoint why. Where I’m in a dark emotional place for days to weeks, and then it passes and I’m back to being me. I choose to remain present in these moments because I try to find the cause. But the truth about any depression is there isn’t always a cause or an explanation. We are always growing and evolving, the way things affect us constantly change, and there are always different reasons for different seasons of our lives. The only thing we can do is be present in them, regardless of the sadness that can trickle in. Life with a chronic illness is unpredictable and can present more challenges because we always live in the unknown, with the only certainty being that it’s just a matter of time before our illness can shift. The holidays for me the past few years since my remission have had some emotional challenges. And because November and December are my favorite months of the year, I struggle in trying to figure out why they’re so emotional, why there’s always something that sets me off. This season is full of so much joy and gratitude and I love everything about it. But the holiday season is also two years since my hysterectomy and six years since my tubes were tied, and those memories have left an imprint on me. The decisions to not carry my own children came from non-lupus related health struggles and many discussions with my doctors, to finally choosing myself, health, and being present for my future husband. I believe I still struggle emotionally because I was single when I made those decisions and battled insecurities and terrible thoughts that a man wouldn’t want me because I wasn’t “whole.” But even though I’ve worked through those doubts and know why I made the decisions, around this time of year, the sadness creeps in because I relive making those decisions all over again and mourn that loss. We all struggle emotionally at some point, and we need to find what best helps us cope. When we bury our feelings, they feed off our doubt and insecurities. They feed off our sadness and can prevent us from moving forward. We need to allow ourselves to be vulnerable and to have feelings that can be painful, and know that no matter how long it takes or how many tears shed, there can be healing and growth in that pain. We’ll never fully understand the “why” behind our struggles, but remember that we’re allowed to have emotional breaks. We are allowed to sometimes be sad that we’re sick, that a life of normalcy isn’t something that exists for us. Remember that these feelings are normal, even though it won’t diminish our pain. Most importantly, trust that there are people who want to help us through our dark times. If we can take comfort in knowing that our pain and compassion unite us, then we will never truly be alone in our hardships. We want to hear your story. Become a Mighty contributor here . Gettyimage by: berdsigns

There is nothing more complex, confusing, and scary than being diagnosed with an illness. There are so many questions you have but never know where to begin. Maybe you dwell on, “Why me?” Or maybe you just take the diagnosis and move forward, accepting it as God’s plan or as your destiny. Life is challenging regardless. It’s full of joy, sadness, love, and pain. Twenty years with lupus, five years off meds, currently in my fourth year of remission, and it has been nothing short of difficult. But over the years I’ve found there are things to help me cope and thrive, ensuring that I’m living the best quality of life I can. 1. Find your balance. We have to remember we can’t control every aspect of our lives. Not every day is a good day, and that’s OK. Each day has different variables, but I strive for progress in emotional, physical, or mental health. Sometimes that means journaling more, baking, or taking a day to do absolutely nothing. I believe that the body goes where the mind goes. I do what I can to lead a positive life, but I’m human and have moments of sadness and frustration. The key is to learn to pinpoint how things and situations make you feel, physically and emotionally. Being balanced isn’t just about fitness and health. It’s about surrounding yourself with good people, enjoying what you do, and finding ways to incorporate what keeps you well. Balance is eating chocolate and binge watching the Harry Potter movies every time they’re on, no matter how many times you’ve seen them. It’s walking your dog at the beach and gym time and happy hour and writing. We are always evolving, so the things that keep you happy and centered can be ever-changing. Find your balance. It will help keep you strong in emotional struggle. 2. Don’t be afraid to say “no.” We know that extreme stress can be toxic to our health, and honestly, nothing is worth toxicity. Hating and dreading your job will keep you sick. Negative people will tear you down if you allow it. Sometimes, you need to cut the cord on the things that are bringing turmoil into your life. Don’t feel bad to eliminate that negativity or say “no.” I used to agree to always help or do things I didn’t want to do, even though I wasn’t feeling well. I struggled with that for years, because I wanted to be helpful. But one day I learned how to say “no” and took a step back. I stopped overextending myself, doing things that caused me stress, and committing to things I didn’t want to do. I learned that by doing those things I would only get sicker, so I became a little “selfish” in the healthiest of ways. Because if you continue to give, people will continue to take and take… until there’s nothing left of you to give. 3. Putting yourself first isn’t selfish. Whether it’s with your doctors regarding your care, or just in daily life. You are all you have, and you have to make decisions that are best for your health. It’s not selfish to trust your intuition and question your doctors on treatment if it doesn’t sit right with you. Since lupus and most autoimmune illnesses are complex, sometimes what you’re feeling isn’t a standard side effect or reaction, but we aren’t all statistics. You are your best advocate, you know when something isn’t normal and you have the right to question your doctors on it. In relationships or friendships, you’re no good to anyone else if you’re not taking care of yourself. Taking care of you isn’t selfish, it’s the best thing you can do for yourself and everyone around you. It’s called self-love and self-care, and in life, the most important relationship you’ll ever have is the one you have with yourself. 4. Appreciate the moment. Sometimes we get caught up in missing the “normal” things we see everyone else doing. Getting up in the morning with no pain is a victory. Getting up in the morning with pain and accomplishing something is a victory. The fact is, living is a victory. I went through a period when I was very sick that I wasn’t sure if I would make it, so I’m grateful for each day. Self-pity is not a reality in my world. I’ve had moments of feeling lost, over-exhausted, and wanting to figure out why I wasn’t getting better, but never self-pity. I’m truly thankful each day I open my eyes. You’re going to have good days and bad days. Whatever it is, accept it and be present in the moment. Life always throws obstacles in our way, and the emotional struggles for me are very real. I go through periods where I cry (a lot), for whatever reason. But then I have fits of laughter in between and try to stay with that. The truth is, whether you want to laugh or cry, embrace your laughter and your tears. Celebrate the ups and downs because that’s what life is. Being alive and being able to feel these things is the biggest blessing in itself. 5. You’ll always be different, but it’s not a bad thing. Yes, you have an illness, and yes this makes you different than other people, but not in a bad way. The fact that you were dealt different cards in life doesn’t mean you are any less of a person. I feel that fighting lupus has made me who I am. It has taught me empathy and how to be an advocate for myself. It has taught me that I’m strong and will persevere. There are times I wish I could have a normal job or social life, but my disease will always be temperamental. My remission means my disease’s activity is quiet right now, but I still have symptoms. There are days getting out of bed is a struggle, or my joints are swollen, or I just “can’t even.” Then there are relationships. These are challenging because there’s a part of me that’s so protective of myself, and another part that believes in full disclosure up front with a potential partner. In another world, I would’ve loved to be a mother and give my future husband his children. But that’s not in the cards for me, and I pray I find someone who understands that and loves me regardless. Just because you can’t do or have the same experiences as the majority of people because of an illness, it doesn’t mean you’re any less of a person. Own your individuality, your triumphs and your struggles. You are different, and you know what? That’s OK. Follow this journey on Lupus Life Balance. We want to hear your story. Become a Mighty contributor here .