I know that I posts more online, whether blogs or other social media platforms, about my illness than many would like read or hear about. I try to post positive comments & pictures, usually family related, as well. The negative ones are not because I want pity or attention, it’s simply because though I am not my illness, my illness is a huge part of my life. How can it not be?? It’s because social media & blogging are an outlet for me, especially since I don’t get out much anymore. Being a private person, I usually don’t share anything at all on my worst days, I don’t go into detail about all of my continuous symptoms or struggles, but at times I do need to get things off of my mind.
Advocating, which I know some are tired of as well, is a POSITIVE act. Since having to resign from teaching due to my health, which is still difficult & painful for me to think about, I struggle with purpose and meaning to my life outside of parenting. Advocating gives me a sense of helping & making a difference, even if it’s small scale. Smiles and laughs caught on camera are positive glimpses, sometimes internal happiness, but not the entire picture. For example: I spent 2 days with friends across the US in DC last week - both inside. Only 1 of those days (day with legislators) required me to be on my feet for extended amounts of time as we walked between offices. Lots of pictures with smiles, because it WAS a special and monumental time. But, physically it was more demanding than I would let myself believe. Nights were sleepless due to pain & over-exhaustion. I’ve been home for 1 week and still have not returned to my “baseline”. Up until Monday, my kids were trying to convince me to go to ER or at least see one of my Drs because they were worried about me. I was worried as well, but didn’t have energy or strength to go anywhere & knew that there was nothing that could be done to help. I already have IV fluids regularly at home along with tube feeds & medications. My body just needed lots of patience and rest, still does. The way my body reacts to what used to be a “simple” day is not caught on camera, is not usually shared, yet is my reality & is extremely frustrating. Keeping my reality bottled up all the time is destructive to mental health. I try to portray positivity, but at times break down and share the negativity of gastroparesis & chronic illness, because if I didn’t I would not remain in a safe state of mind. You don’t have to understand, only those that live with chronic illnesses truly can, but please be respectful & mindful of the need to express negativity at times. I used to try and teach myself to “force positivity” all the time, but found myself sinking deeper in despair. Being “fake” or “wearing a masks” , which I still catch myself doing to prevent others from seeing my pain & how bad I feel, is often much more draining & isolating in the long run and can lead to a more dangerous path for oneself. Therefore, I apologize if my posts get on your nerves, are negative or sometimes even depressing, but I do not apologize for being real, being human, and looking after me.
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I know that I have not written quite as often over the past few months, or to be honest, last year as a whole. It's not that I didn't want to, in fact I really felt the need to share and process the mental anguish that I have been dealing with as a result of my physical illness, medicine side effects, trust issues, and complete exhaustion. I just have not been able to find the right words to accurately express my thoughts and experiences.
During 2018, I tried to persevere through my low moods, discouraging seemingly unbearable days, fears, and sadness for the sake of my children and family. I tried hard to focus my attention on the "more tolerable" days and the creation of positive memories on those days, to help me survive the unfavorable and undesirable days. I attempted to be present with my kids and family as much as I could, accept and respect my body's limitations, and pursue the highest quality of life that I could, regardless of the side effects I would face later. (And yes, they have been and continue to be brutal and last for days.) But what is the point of being alive if I don't allow myself the opportunity to live and experience moments with my family? During 2018, I lost touch with an important part of me. I spent months feeling numb and lost, but during the foggy moments I still tried to remain true to my goals and intentions. Yes, it was incredibly hard and at times I wanted to quit, wanted to give up, wanted to disappear - but the love from God and my family, as well as some a few close confidants, didn't allow me to drown. They remained by my side and gave me the encouragement to hang on just one more day, to strive for the beautiful moments in life, and to relive the meaningful and special memories in my mind when days seemed too dark or painful to continue. The final month of 2018 ended up being a realistic summary for my entire year. Health issues. Mental worries. Emotional lows. Physical and emotional exhaustion. The feeling of living in a daze. Injuries, from falls, that I was determined to handle on my own. Ignoring medical needs momentarily as I tried to "figure it out" or "allow it to fix itself" on my own. Challenging and taking risks outside my comfort zone, in search of treasured memories with loved ones. And days of consequences that made me rethink and appreciate the meaning behind each of my chosen actions. I ended 2018 with my kids, husband, and dad at a football game. My youngest kids are high school students, avid sports fans, and have attended numerous ball games with their father and grandfather. However, I decided to attend this game with them. It was the very first time that I have ever been with them to a football game. Was it easy? Definitely not! I was beyond exhausted. I was nauseated. My body ached all over. My heating pad was necessary at the hotel. I humbled myself and agreed to riding in a wheelchair from the parking lot to our seats. With the exception of the game we remained and rested at the hotel. (Which admittedly was more than worthwhile, because it helped me reserve that much needed energy to sit at the game and bring in 2019 with them by my side!) Due to my feeding tube splitting and leaking, I had to go a few days without running my tube feeds - which added additional strain to my body. My IV fluids were infused in the hotel room and during the car ride. My body definitely hated me, my mind questioned and partially criticized me, while my mind, spirit, and heart were full of love and pride! My life is not ideal, that is for sure, but miracles still surround me, and for that I am most grateful. 2018 has had its ups and downs, achievements & letdowns, laugh & tears. Every year will. Emotionally & physically I have been challenged, but through it all God & family have remained steady. My goal for 2018, will continue throughout 2019; Striving through difficult days with the memories created during the more tolerable ones. One thing I’ve learned through my experiences, through saying goodbye to friends & loved ones that have rejoined Christ in Heaven, is that life is too short and treasured memories are too important to waste. (Even if I have to deal with terrible physical consequences afterwards.) Our online GP support group said goodbye to 50 young souls in just 2018 alone, 50, and that does not include any of our friends that passed on prior to 2018. I'm sure that there are probably others that we are not aware of. A friend I was close to in high school and another school classmate ended their lives at the age of 39 and 40 a few months ago. Family members and family friends have passed away this year, some of which were unexpectedly, due to illness and/or accidents. No one is promised tomorrow. Happy New Year everyone! I'm sure that we all will have hard and difficult days during 2019, but may we also be blessed with so many more enjoyable ones to share with our loved ones and friends. I have learned that vulnerability scares me and chronic illness has added to the fears. Throughout my life, I have built walls and reinforced them more and more as the years have passed by. I avoid letting others get too close in an attempt to protect myself physically, emotionally, and mentally. I do not like to let other people know the most protected aspects of my inner self and personality. Being vulnerable, in my experience, often provides others with too much power that in turn ends up harming me in some form or fashion. Vulnerability as a patient, literally scares the hell out of me, especially with doctors that have not earned any of my trust. Vulnerability requires transparency, reaching out from my comfort zone, and taking risks that I will be dismissed, doubted, questioned, or mocked from the very doctors (or nurses) that I am trying to receive help from. Past medical experiences that I've endured have led me to retreat further and further, and created new apprehensions, memories, and fears. I've been dismissed, ignored, told it's all in my head, etc various times since being a teenager. Those same doctors, the ones that were supposed to be treating me and helping me get better, instead told me that there was nothing else they could do to help me. I believed them, because what they said was supposed to be right. They had the medical degree, not me, so I tried to convince myself to work through the symptoms, stop complaining, and to stop being a wimp. And you know what? After months of dealing with the same issues with no improvement and often worsening symptoms, I finally ended up seeing different doctors which eventually led to answers and relief. In some cases, I had to deal with the ignorance in emergency and/or hospital rooms until a new doctor was assigned to me or my vitals went haywire. Each of these times, I had known that my body was not right - but was simply not listened to or not believed - and taught to doubt myself and my reasoning when I had been right all along. I get it, we can't expect to be "cured" or "healed" when we don't know what the issue is, but making patients feel like they are making it up or not experiencing what they most definitely feel within their body, is more damaging and sometimes downright dangerous. In some cases even life threatening. If a doctor doesn't "see" the problem, if the test(s) aren't discovering the definite problem, the least one can do is reinforce with the patient that you believe them and are going to continue trying to help them find a solution that will help them feel better. It may take a while, it may take patience, it may take monitoring or trial and error symptom management, and that's okay. It appears at times that Doctor's will suggest a possible issue, may (or may not) conduct a test or two to rule out a possible diagnosis, may try a medication, but then if you don't improve, it comes back as being the patient's fault. The patient is blamed for how they are feeling or blamed for not getting better yet. Many doctors can't seem to accept that they may be full of knowledge, but they still don't know everything. Some (thankfully not all) doctors carry too much pride or arrogance to admit that they don't have the answer or the cure. As a patient, most of us gain respect from a doctor that admits this and follows by saying that they will not give up on helping us find improvements, even if symptom management is all that we can do. And trust me, there are some rather awesome doctors around! I can admit that. A little suggestion from a patient, please don't tell patients that they are not feeling what they feel, or that it isn't real, and then send them away or drop them as patients. This doesn't help! Patients remember and internalize the way they are treated and begin to resist and doubt the intentions of doctors in the future. They begin to lose hope, withdraw, and at times give up on not only the medical field, but on themselves. When we begin to feel as if no one or nothing can help us, that we are at fault for being sick and feeling as awful as we do, we lose our perspective. Many of us carry around the weight of being (or feeling like) a burden to our families, losing the careers that we worked so hard for and even loved, watching our family worry too much, or even begin to feel worthless. Who wants to live like that? We are all different, how we think and process things may be different as well, but at some point the resiliency and desire to keep trying so hard diminishes. We are expected to trust our doctors, sometimes more than we trust ourselves. We are expected to expose our vulnerability. But how? According to urbandictionary.com, the definition of Vulnerable is "Someone who is completely and rawly open, unguarded with their heart, mind, and soul. Being vulnerable happens when you trust completely. Rather its vulnerability by pain or joy, it's being exposed with all of the emotions that make it easy for someone (someone you trust) to really do some emotional damage or healing.. Vulnerability is the surrender of all control and personal power in regards to letting someone close enough to destroy you!" Vulnerability as a patient is most definitely daunting. and intimidating. Placing your self care in someone that you are expected to trust, when so many other medical encounters have proven otherwise, is a difficult challenge. The frustration of some doctors minimizing pain and sickness, condemning you for not "getting better" or allowing your disease to interfere with your life, condemning or blaming secondary gain if you try to hang on to blessings or portray optimism - is a no win situation. Unfortunately, some doctors create more harm than good. Don't get me wrong - there are magnificent doctors around as well. They are able to "see" and "understand" their patients, are beneficial, and truly make a difference in healing or improving their patients' health, and in return life. The thing is, when a someone is already struggling and falling apart from illness and it's impact on daily life, a doctor has the power to throw the life line to help or the anchor to make one drown faster. Sometimes the tide that moves us, is set in motion by the personality of doctor that treats us. Literally, our lives can depend on the luck of the draw or flip of the coin. For example, I spent months dealing with severe off and on lower back abdominal pain and nausea as a young 32-33 year old adult. I had extreme pain spells that would take my breath away and bring me down to my knees. My primary continued to tell me that if I lost weight it would help. According to him, my pain was a result of my eating habits and lack of exercise. I was told to take tylenol. There was nothing else he could do. Labs were fine. Could be a pulled muscle. Probably just stress. Etc.... (Chronic Patients know the routine.) I was made to feel like a fool. But once again, doctors are "supposed" to know best. So I continued teaching through the sporadic pain spells. Tried to ignore them. My young kids (a first and third grader at the time) massaged and walked on my back to help relax the muscles. Labor Day weekend 2011 my symptoms became too extreme to stand or sit. I couldn't stop throwing up and heaving. I could no longer ignore my body's messages. I could no longer convince myself that the doctor was right and that nothing, besides my weight, was wrong with me. Hours later, I gave up and drove myself in the middle of the night to the local ER. (I have no idea how I made it there in the condition I had allowed myself to get in.) Treatment in the local ER was inadequate as well. My pain level was off the charts. I couldn't stop vomiting. I couldn't find a comfortable position. The pain was making me extremely restless, dizzy, and weak. They discovered that I had a 9 mm kidney stone. We were told that I would be sent home with medicine and would just have to wait it out. While there my body was literally shivering out of control. My teeth chattering so hard that I was unable to get them to stop or even slow down. I was FREEZING internally. But I had no fever, so the nurse berated me, telling me that it was "JUST a kidney stone - stop being a baby." My husband left to go pick up the medication while they went through the discharge procedures. My mom was concerned and kept telling them that they could not send me home like this. Apparently, my coloring did not look good to her. Something was definitely not right. They ignored her. I was in too much pain to talk. They took my vitals one more time before discharge to find that my blood pressure had dropped to 60/30. I went from being rushed to discharge to raced upstairs to the ICU, had emergency surgery, and upon being placed in a recovery room, my blood pressure crashed again so I was rushed back to the ICU. A day or two later, after I stabilized, I spent nearly a week hospitalized in a regular room. My mom told me that it was like I was in a coma (though wasn't). I didn't talk, move, or open my eyes for days. The "just a kidney stone" that I was such a "baby" about was actually impacted and had caused a major kidney and bladder infection. My body was going into septic shock and my family was told that my kidneys had been in the process of shutting down. My doctors later told my family and I that I would likely have died if I had been discharged from the ER. I was fortunate. During the madness, someone did step up, listen, and take care of my needs. I have other memories validating the fact of medical professionals doubting and dismissing my health concerns, only to later find out that I did indeed have something going on that could be corrected, contrary to their belief that "everything was fine." From gallbladder stones, to severe constipation and impactions as a result of colonic inertia, pain and problems from pelvic floor dyssynergia, esophageal spasms from hypertensive lower sphincter, and central line infections (including bacteremia for at least 2 weeks while searching for answers and help while extremely sick), my experiences have varied over the past few years. Doctors have proven to me that vulnerability is a risk that I may NEED to take, but still fear greatly, because of previous medical experiences. Stating that, I must give credit to the doctors (and nurses) that did listen and help me in the midst of the negative experiences. Additionally, I must remember that, like us - doctors are human. Like us - doctors choose how to react and will make mistakes sometimes. Like us - doctors have good and bad days. Which unfortunately doesn't make being vulnerable any easier. I have had and currently have some wonderful and greatly appreciated doctors. Even though I may trust them, how much I actually open up or let them know depends, as I find it pointless to keep repeating the same issues/symptoms over and over when I know that there is no simple fix. But knowing that there are knowledgeable and compassionate doctors that are willing and wanting to help is most definitely reassuring. So as one can see, vulnerability as a chronic illness patient can be very challenging and frightening. Our lives are put in the hands of others, we have to be transparent in order to have a chance of some relief and healing, while knowing in the back of our mind that we are placing ourselves at risk for additional harm as well as lack of understanding or relief. This is just a portion of the reason that vulnerability fears invade me in regards to healthcare. I recently discovered a new artist, Stine Bramsen. When listening to her music, two of her songs, which I have included below, really caught my attention. I know in reality that the her lyrics and messages are suppose to be different from my interpretations. I am aware that she is singing about relationships and the challenges that can occur. However, the way I personally relate to these songs, are not in regards to a romantic relationship with another person. Instead, they make me think about the relationship I have with my own body and chronic illness. You see, to me, her song "Not Giving Up" is an encouraging voice to my own personal health challenges. It represents the way I feel. It reminds me of how a conversation between my inner spirit and illness may go. No matter how hard I try, I can't get away from my body. My body, sometimes physically from chronic illness symptoms, sometimes mentally from being exhausted of coping and dealing with chronic illness on a daily basic, creates pain that I want to escape, but can't. My body, physically and at times mentally, can be, and often is, my body's worst enemy. My body is ALWAYS trying to fool me. It tells me that it's hungry, needs nutrition, needs hydration, but when I attempt to provide it with what it needs, my body betrays me. Instead of just using the nutrition to help me, it creates crippling abdominal pain, bloating, nausea, and at times heaving or vomiting. My mind also fools me, persuading myself that this bite or swallow will have a different, more tolerable result, until I actually follow through. Then BAM! Consequences arise. Not to mention how little I can actually handle physically, before relentless exhaustion overcomes me. How the hell do you trust a body that is constantly deceiving you? But, I have to stay. I can't trade my body in for a new one. The scars of my chronic illness are all over me, internally and externally. Scars from numerous surgeries and procedures. Scars from painful and negative medical experiences, hurtful judgmental comments, medical appointments gone bad, medication related side effects. Scars from missed opportunities with my kids whom I love immensely, and the loss of identity from leaving a career that meant so much to me. Scars that remind me of the path my body and health have led me down, scars that have an impact on how I view myself. I can't deny - there are times, low challenging and terrifying times, when I want to be completely be done with my body. Times that I have contemplated how I can end the pain because it just won't stop! Nobody cuts or harms me the way that my health has. Illness just won't give up on destroying how I feel. At the same time, part of me is resilient and won't give up either. My soul is not giving up, it fights to put illness in it's place. I strive for better physical health, while also respecting my need to feel ALIVE, to feel like I am living and not just existing. My heart and voice are pushing me, not letting me give up on myself. Because of my family (especially my kids) and God, I keep living. I'm trying to let go of the grip pain has on me, let go of the bad memories, let go of the guilt that illness has made me feel, let go of the power that disappointments from being sick has made me feel, let go of the negative impacts being ill has had on my life and the way I view myself. I'm attempting to learn how to let go of the things that I can not change or control, while not giving up on ME. I am appreciative of others that have not given up on me, and that have in return helped me to not give up on myself either, even if my illness itself will not give up and disappear. I thank my loved ones and the caring doctors that have been an essential part of my journey. Unfortunately, not everyone has been encouraging, understanding, or supportive. There are people, some that know nothing about me, and some that were responsible for helping me, that bring me down with their irresponsible judgements. Admittedly, I too, have passed harsh judgement on myself. Most of the time I can forget and forgive those that pass judgement because I know that they don't know what life behind my front door looks like; but the hurt of being judged still appears and is still unnecessary. Even more so, the heartache of people in the chronic illness community, being denied help or dismissed from medical doctors or nurses that lack compassion or willingness to truly listen is inexcusable; Which brings me to the other song I found today by Stine Bramsen, "Don't Judge Me." Cruelty and judgments, even when deceivingly done behind my back, hit hard. Not only does it devalue or minimize the impact of my illness, but it also sends me down a misguided path of shock and despair. Just because one does not have the capability of feeling my pain, feeling my nausea, living the negative consequences of my illness, or witnessing the decisions and choices that I make (disregarding the costs that I will have to accept later in exchange), does not give them the right to judge. Trust me, I would have no reason to pretend or exaggerate. There are no gains that would make it worthwhile. Why would I choose a life of torture? I can't undo the painful truth of how horrible my body feels, I can't undo the honest truth about how much pain food causes, I can't undo how much fatigue I experience, I can't undo the amount of nausea and lack of sleep that I endure. I can't undo the reality of my health. I can't undo the harm that some judgments have on my spirit. As Stine's beautiful and powerful lyrics say, "I can't undo the painful truth, I can't undo, God knows I wish I could. Don't judge me, cause I can't have, I can't have your blame on me, cause you were not there, you were not there; so don't judge me, I can't take it anymore." Sometimes, I "need to hide my pain away" to try to reclaim and live life. It doesn't mean that I am not hurting. Sometimes, when smiles and laughs are seen by you, inside I feel like I'm crumbling apart or that my insides are about to explode at any moment from pain, or feel like I will soon begin heaving by the aromas around me or intense nausea, but I choose to hide it in order to help those I love enjoy moments with me. I sometimes hide my miserable symptoms to strive for something meaningful and cherished in my life. I choose to hide my symptoms, to protect others from worrying about me, or in attempt to protect my own mentality and spirit, if only for a few moments. So unless you live with this illness, you will never know how life-changing and terrible this illness can be on one's life. "You'll never know how I hurt inside. You'll never know how I've cried and cried and cried." Unless you live with the daily pain and consequences of chronic illness, don't judge me or others. "I don't deserve you hate on me." Neither do they. Trust me, those closest to me, know that "I am hard enough on me" already. I already downplay and minimize the symptoms I experience more than I should. I judge myself harshly by what I can't accomplish but desire so much to do. I judge myself for what I miss out of in life (especially when it comes to my kids), for what I have had to give up (like my career). I judge myself critically for why I am not better yet. I judge myself unkindly for judging myself on things that are outside of my realm, outside of my control. So please don't judge me, I can't take your judgement or blame anymore. I do NOT write for sympathy. I do NOT seek sympathy from anyone.
I do NOT write for attention. I do NOT seek attention from anyone. I simply write to record and process my personal experiences and post in the off chance that they may help someone else. I simply strive to discover a better quality of life; to figure out a way to help my body feel better while living with illness. If you do not understand and accept that, then step out of my way, taking your false accusations and judgements. The morning was fairly normal,
when compared to my normal at least. My fatigue and nausea, more pronounced, but in my experience they are always a beast. I rode with my son on an errand looking for where at his school he's to park. Not knowing what lay just ahead was my body preparing to spark. I infused my regular lactated ringers using my PICC line, like every other day. Fueling my body with needed fluids to keep my dehydration at bay. But hiding beneath my skin were embers that were no longer dormant. Out of nowhere chills overcame me with pain in my legs a boiling torment. The internal blaze combusted My body radiating such heat. Intense freezing yet also burning Fever scorching over 103 Unable to sit still or even to walk I was in such tormentuous misery. An infection was clearly simmering, uncontrolled wildfire burning within me. I tried denial and avoidance For at home is where I wanted to stay. I didn't want another line infection My mind unsuccessfully tried to will it away. But, my family saw through my anguish urged me to get promptly checked out. Sluggishly I made my way for another hospitalization, no doubt. "I know my storms are not over, but I also know that my God is faithful. With every storm, there will be a rainbow. What an awesome God we serve! Just when we think we have had all we can stand, the clouds break and the sun shines through. It's as if God is sending us a hug, to encourage, strengthen, and bless us on our journey." (30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans ) How fitting this quote is! As I was riding down the road, with my kids in the back and my dad driving, I came across these words in the book I was reading. I stopped and reread the quote to myself, taking it all in, before I shared what I had read out loud.
God is Great! God has so much Love and Grace for each of us, every single day! Life is not perfect for any of us, some roads are trickier and bumpier than others, but we all have obstacles that we will face. I feel like I've been through the ringer physically, emotionally I have been pained, and mentally I have been exhausted. But through all of this, no matter how it feels at the moment, deep down I know that I am not alone! God is with me every single step along the way. I may overly doubt myself and mistrust others, but God is loyal, loving, dependable, and constant. The devil tries his damnest to bring me down, to help me cast negative judgements against myself, and attempts to make me feel like I'm running solo down a path of pain, sickness, and heartache. But GOD is UNSTOPPABLE. HE pulls me through time and time again. The past couple of weeks my fear about an upcoming trip was becoming louder and louder, almost causing me to freeze and cancel. I wasn't expecting to feel "well" for the trip, but became fearful that it was going to be too much on my body. My husband tried to warn me, make me rethink my decision. But I held steadfast. I put my Faith and Trust in God that the trip would be not only memorable, but positively treasured. Physically, I was expecting to have my normal symptoms and illness related restrictions and challenges, but mentally and emotionally, I needed and wanted this trip. You see, this was the first vacation that I would be partially sharing with my children, my dad, my brother, his wife, and my adorable little nephews. I, personally, have never been on vacation with my nephews, who are 4 and 6. The weather was perfect with nice breezes and little/no humidity. My family was so accepting and mindful of my personal needs. Early on we saw how easily my body would give out on me as we walked from the parking lot to the museum. But my family didn't let it bother them at all, which kept me feeling comfortable and at ease. My afternoon and evenings were spent at the hotel running fluids and relaxing, while they did other things together - such as swimming or walking around the town. My dad and son even went on a ghost walk together. My kids stayed up late with me to make sure I didn't fall asleep while running my IV fluids since my PICC line wasn't cooperating at all! When I was out with them, I was in a wheelchair/scooter, kept in the shade, or sitting in the AC of the car while they explored some of the sites we stopped at. No pressure, no judgements, and no expectations were placed on my body or me. I was truly able to enjoy and live in the moment, carefree of what anyone other than my family and me thought. We had fun! My nephew took charge of pushing me in the wheelchair as he enjoyed it so much! Must admit, he made the ride very interesting. The sickness I experienced was typical, the recovery period a little more than expected, but the experience of this vacation was oh so worthwhile! We all enjoyed the vacation and the memories from it will most definitely remain for a lifetime! I believe that God knew I was in desperate need of some encouragement and motivation, so HE ensured that a comforting "rainbow" was sent to me during the "storm" in the form of a wonderful vacation. My body may take time to refresh, but, emotionally my heart and mind was rewarded. How do you say goodbye to the person you no longer are?
How do you grieve, find some level of acceptance, and move forward with the person that you have now become, since chronic illness made a presence in your life? I think it's reasonable to understand that chronic illness can and does negatively impact our lives in various ways. It causes, or at least it does me, to question who I am and what role I now have in society. When one unexpectedly becomes chronically ill, there is so much more to handle than just our condition(s). Often we, the patients, are using all of our available energy attempting to treat, or in many cases, tolerate, our symptoms as well as possible. Daily, we face limitations, some of which are visible, and others which are hidden. When chronic illness resides within us, more than just our physical life are tampered with, and unfortunately, in some situations, destroyed. The reality is that many people that live with chronic illnesses are.......
All of which dramatically alter and impact not only our's, but also our loved ones' lifestyles. These undesirable changes can create a LOT of confusion and uncertainty. Our identities, the ones that were familiar, the ones we created, and often the ones we defined ourselves by, suddenly disappear. Our new reality is scarier, stranger, unknown and flooded with uncertainties. Not only are we left suffering and trying to figure out how to best live with our new health conditions, but we are sometimes left emotionally suffering as we try to figure out our new "normal". Waking up one day to a strange body and eventually staring at a stranger in the mirror, one that you no longer recognize, can be agonizing. It's mentally exhausting and disheartening, especially when you can't seem to let go of your former self. How do you decipher your true identity, the one that is suppose to represent us for our entire life? Ideally, I think you would reflect up your talents, knowledge, skills, personality, and ultimately your "being". But what happens when you just see an empty blank slate? When the talents and skills that you once saw in yourself have become obsolete? When all of your most current knowledge seems to dwell on your medical experiences and personal research. Your personality bounces around from one extreme to the next as you try to protect yourself or the ones you love from the horrible symptoms, loneliness, and at times negative thoughts that poison your spirit day after day. Avoidance and distractions become the norm. Withdrawing yourself, so there is no one left to disappoint or feel disappointed by. For me personally, I catch myself trying to withdraw from everyone except my kids. I believe that it's important for us to recognize our tendancy to withdraw or isolate ourselves. Let's be honest, living with chronic illness is already isolating us enough. We don't need to isolate ourselves any further. We need positive personal connections to maintain our "humanness". Sounds easy, right? Hell, I wish that was the case. You see, when dealing with feeling physically awful day after day, facing nearly constant symptoms, missing out on special experiences and opportunities, letting others down with failed plans, and also dealing with negative consequences on account of your actions on a regular basis - your mind begins to be compromised as well. When you lose yourself, lose your identity, and no longer know who you are or what you have to offer, it becomes difficult, seemingly impossible, to communicate, share, encourage, support, or even genuinely connect with others. It's like the way you view yourself slowly begins to erode away. Everything you used to think about yourself is now challenged by your new limitations, placed on you by your own body. Reconsidering who you are deep down inside and having trouble defining yourself to the world can make it even harder to accept the realities of living with chronic illness. You start to feel angry, hopeless, helpless, resentful, damaged and yes, even depressed. Coping can become overwhelming and your new identity just isn’t as helpful or desirable as your old one, or at least that's been what it appears and feels like for me recently. Deep down I know that I am someone. I know that I try to help others when I can. I know that I'm kind and compassionate. I know that I'm a caring and loving parent. I just can't figure out how to redefine or reconnect with myself. I have been sick for over 5 years now. I was sick for a few years before I started losing my identity and self. I was able to hold on to my identity when I believed that I was going to be healed. My mentality or anxiety did NOT cause my illness. But, I can admit that the past couple of years have been a course of ups and downs as I struggle to live with the stress that chronic illness has placed on my daily life. However, I refuse to cave. I am determined to reclaim and identify with a newer version of my identity. One that is respectable, acceptable, and manageable for me. So let the quest continue... ------- If chronic illness has led you down a path of an identity crisis, I would love to hear your story. How did you redefine or reclaim your identity? Feel free to comment below or private message me via the contact form. |
Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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