Living with chronic illness can be extremely frustrating and complex. All of the sudden, life no longer appears the same. It takes on a completely new view. Simple things that were taken for granted are now appreciated more than ever. Not only do you have to adjust to life style changes, but your outlook on life in general may change as well. At times it may even feel like you are no longer you, almost as if you are a character in someone else's story. Regardless of who you were when your illness began, all of a sudden you begin to become an "expert" about yourself and your condition. New knowledge about every aspect of your illness (illnesses) becomes a part of your everyday language; diagnosis criteria, medical terminology, symptom descriptions and explanations, diagnostic testing, treatment possibilities, coping strategies, etc all become familiar common day to day discussions. Additionally, the relationships you have are often altered. Some friendships are lost as new ones are created. Some connections are strengthened where as others diminish. And that's ok, because you are no longer identical to the person you were before your illness. Sometimes the paths we are traveling do not coincide with the paths that others are traveling. This is not always an easy concept to accept, but with time you will be able to determine the people that are necessary to accompany you along your health journey. Through experiences you will be able to discover which relationships provide you with the encouragement and support that you need. Be patient and remember that you're not the only one that is facing a change in their life. Everyone has their own circumstances to navigate. Everyone's experience will differ, even if the medical journey has many similarities. The dynamics of friendships, families, medical teams, and colleagues as well as individual personalities all play a part. I could go on and on all day describing the way that my personal relationships have changed. Today, however, I want to focus on how the relationships that I have with medical professionals and my communication with them has been influenced by my illness. During my childhood and early adult years I did not put a lot of thought in characterizing nurses and doctors. Basically, if I needed a flu shot, had an injury that needed to be looked at, was dealing with a cold, or sick with a "common" virus that was being passed around, I could simply find a doctor to visit. It really didn't matter to me which nurse or doctor I saw. There was a blanket trust that they would know what was wrong, share with me how to treat it, and then send me home to recover and feel better. I did not understand the importance or value of remaining with a specific doctor or taking the time to create a bond. During this time any nurse and any doctor could meet my needs, whether they had seen me before or not. But now that's not true. When plagued with a chronic illness you learn really fast how important it is to actually create a medical "team". A team that knows you and understands you. A team that will work with you to devise a "game" plan. Communication, empathy, and compassionate care all become necessary, along with their medical knowledge and expertise. It's no longer a quick in and out, routine, easy fix. The relationship with your physicians and nurses matter now. You can no longer survive with just "any" doctor. The type of relationship formed can be extremely powerful, possibly even a game changer or life saver. Unfortunately, assembling an effective medical team that meets your personal needs is not as easy as it sounds. Personalities can clash and the type of care that you each expect and envision can differ greatly. A single doctor and/or nurse can completely ruin your perspective, can be dismissive, discouraging, and make you feel as a failure or lost cause. On the other hand, a single doctor and/or nurse can be the light on your darkest days. They can offer encouragement and provide you with hope for the future just by taking the time to show that they care about you as a person, not just a case number. I am fortunate to have a medical team that I trust, respect, and am comfortable with. In my heart, I truly feel as if they are here to help me along my health journey. They may not have all of the answers, they may not hold a key to the cure, BUT they ensure me and show me with the actions they display toward me, that they will not give up on me. I believe that they will continue to help me search for improvements regarding my health. They listen to me and actually seem to be invested in figuring out how we can work together to make my life with illness more tolerable. Sometimes, I'm in awe at how proficient and knowledgeable they have become at understanding me. When you realize that you are surrounded by doctors and a nurse that can uncover the truth about how you feel (even when you're trying to be strong and brave), then you also realize how comforting it feels to know that you are in great hands. Unfortunately, not every doctor or nurse fits this criteria. In fact, it can be a rarity when dealing with chronic illnesses. However, my current medical team is phenomenal! I can not deny that I feel blessed with the care that I currently receive. I appreciate and value my medical team more than they will ever know, though I do attempt to express my gratitude with them. I may still have plenty of health struggles, but I am relieved knowing that my best interests are being looked after, at least for now. Even with a phenomenal medical team, I still have challenges. If you've read my previous blogs, it's no secret that I have a difficult time being completely open about my symptoms and how I feel. All too often, I hide how awful I feel and have trouble expressing the true severity. My family and medical team are well aware that I tend to downplay my symptoms a lot. The majority of the time, I remain quiet in an effort to remain positive and to keep from annoying or bothering. What they may not know, is that I have never been as open with anyone, especially doctors, as I have been the past couple of years. I'm still on uncharted waters. I really want to be completely honest as soon as issues arise, but emotionally I second guess myself. Before messaging or calling them, I spend hours, days, and sometimes even weeks trying to determine if it's worthy of bothering them. I'm not trying to be stubborn, but instead wanting to demonstrate my respect by not wasting any of their time. I value their support so much that I do not want to chance pushing them away, irritating them, or becoming known as a constant complainer. I try my best to make sure that I keep them updated, it's just that sometimes I'm not as quick or as clear as I should be. If I'm going to contact my health team, I want to be sure that it's important - not something that I should be able to correct on my own and not something that will improve on it's own if given enough time. My doctors, home nurse, and family members have done everything in their power to encourage me and persuade me to be completely open and not hide or minimize my struggles. In an effort to better communicate, I must first determine how to distinguish the difference between updating/sharing concerns (which is desirable) and complaining (which I want to avoid entirely). I believe that updating and keeping my doctors informed is essential in order to make progress and improve my quality of life. If they ask, I do always try to answer as honestly as possible. I acknowledge that I need to reach out if a new issue arises, if I'm feverish or experiencing chills, or if the severity of my symptoms intensify for days after days and are not improving with our current treatment plan. Updating can be necessary if there's a possible treatment plan or adjustment that can be made to improve my current condition. On the other hand, complaining would be best described as a nuisance nag with no action or treatment expected in return. I feel confident that I do a great job at not complaining to others, for the most part, but can likely do a much better job at updating. I also admit that many times I hesitate or procrastinate too long, but it is always with my best intentions and out of complete respect for my medical team. In conclusion, many aspects of your life can change when living with chronic illness. Your relationships with family, friends, self, and even medical professionals are certainly going to change. Your power lies in how can you make these changes work in your best interests. What can you do to ensure that you are surrounded by the care and support that you need and deserve? My current goal is to allow my family and medical team to learn how they can better help me. In order for this to occur, I'm going to have to be brave enough to let down my guard some more and become a better communicator.
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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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