Taking a look into the rear view mirror of our life. We've all been here at one time or another; Looking back to see what we could have done differently in our life. Would it have changed our outcome? Would it have made things easier? The truth is that we never know for sure.
Today, I am going to share with you what I wish I would have known at the beginning of my Gastroparesis Journey. For those that have already embarked on this journey, you may be able to relate. For those just beginning with their diagnosis, maybe this will help you. Looking back, I wish I had known that there is nothing wrong with me. Having Gastroparesis is NOT a sign of weakness. People from all different walks of life have Gastroparesis. I did nothing to cause it. There's nothing I could have done to prevent it. It's just one of those things that happened. Possibly part of God's plan to get me to where I am today. So why, a little over 2 years ago, was I so ashamed? Why was I afraid to talk to people about it? Why did I try so very hard to hide my illness from other people? Wearing the "I'm ok" and "nothings wrong" face used up so much of my energy, yet I was determined that I had to pretend everything was alright and that I was so strong. I wish I would have known that I was not alone in this battle. I wish I had known that there were helpful online support groups. Feeling alone and isolated, may be part of the reason I put up a fight to hide my illness. When I was diagnosed, I was not aware of support groups and could find very little if any valuable information on the internet. Doctors, especially in my hometown or in the ER , weren't even familiar with Gastroparesis and the best treatments. I didn't have anyone to talk to about what was happening or how I felt. I didn't have anyone that truly grasped what I was dealing with. My family tried to be there for me, and they still do, but they didn't truly understand. It hurt feeling like I was the only one who knew how awful I felt. It hurt feeling like I was not being heard or taken seriously. I was in misery all alone and by myself, but I'd find out later that I didn't have to be. I honestly felt how hopeless one can feel. Even though I personally never considered suicide, I could see how other's have, and that's one scary feeling. I have felt so low and in so much pain that I just wanted it to end, no matter what. I felt like I was such a burden on my family and even my kids and sometimes believed that they would be better off without me. I know that's not true, but it's amazing the things you think and feel when you are fighting a battle alone. I wish I had known that carrying around my backpack with feeding tube didn't change who I was. I was extremely self-conscious about my feeding tube to begin with. I did my best to not wear it in public or try to mask it. I felt gross and like a freak of nature. I had a love hate relationship with my tube, still do at times. I was disgusted with having a tube inserted in my body. I thought that having this tube was disgraceful. I felt less human. But why? Why was I so determined to be "normal"? What is "normal" anyway? Didn't I know that everyone has their own battles and that there is not a perfect "normal" around? I wish from day one of my illness and especially at the point of diagnosis, that I had more coping skills to help me get through each day, each episode, each flare. Knowing how to accept the illness, find comfort in music, relaxation with a long hot bath or using heating pad, relief by talking or writing about my ailments, etc. It would have been nice to have been able to successfully apply these coping skills earlier. In retrospect, as I look in that rear view mirror, there are things that I wish I had known or recognized earlier. But if given the chance to change them now, would I? I don't think I would. I want others to know they are not alone, not less human, not at fault, not weak, and that there are resources available. I want others to be able to find and apply coping skills to decrease their struggles. However, I wouldn't change my past. Why? Because these experiences, thoughts, and feelings helped me become who I am today. They set forth the path that I believe God has intended for me. Feeling isolated, having difficulty finding resources, feeling ashamed or like a freak; they all helped inspire me to help others. If I had not lived through those experiences, I wouldn't have met Melissa. I wouldn't have become involved with advocacy or better yet, never even considered advocacy. I wouldn't have found passion in sharing my story to help others, fight for awareness, or demand more resources and better treatment options. Now, I know that I can be strong without pretending. Strength is shown by sharing my story, by helping others, and being real. Through my struggles I found myself. I found an outlet for my frustations: Advocating via blogging, emailing, Twitter, Facebook, support groups, etc.. Nothing is going to stop me. I have a spark and determination within me. Yes, the debilitating and horrendous symptoms of Gastroparesis may knock me down, may even try to hold me down, but I WILL get back up. Even if it takes a few days or weeks. I will no longer sit in silence! I completely grasp loneliness, and I will do everything in my power so that others don't have to realize that feeling. I will NEVER GIVE UP!! My closing remarks and advice for those newly diagnosed with Gastroparesis, or any other chronic illness is that there is no reason to hide who you really are. You are You, and there's no one ever exactly like You. So be the real You and great things will happen. You are NEVER going to be able to please everyone, or make everyone happy. So be true to yourself and happiness will be discovered. Learn from your experiences, allow them to make you stronger. Remember that you are never alone. Reach out for a helping hand when needed. When possible offer a helping hand to others. Find a way to have your voice heard. Whether it's social media, writing, singing, talking - you have a purpose and you have a message. Use it. You will be amazed how better you will feel mentally and emotionally. You will have difficult days. You will have days you want to give up. And that's ok! Just hold on hope and stand back up. You are a warrior, you are a fighter, you are a crusader - just like me!
2 Comments
Amen! And God Bless! Beautifully said and written Trisha! I can relate to so much of what you are writing! I am not the Sam person I was when diagnosed in 1999, I have shifted and changed into the true me! A freer me! Yes we are in pain. Yes we suffer, but I have learned so much also. Thank you for sharing your thoughts and experiences! You are making a difference!
Reply
Robin McNamara
6/12/2015 01:00:58 pm
Well said and so very true. Thank you for sharing your words!
Reply
Leave a Reply. |
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
Categories
All
More Blog Entries
March 2024
|