“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.”
– Josh Shipp
I've really wanted to do a "What I wish I would have known" post. My plan was to take other peoples experiences, showing you more than just my journey, and build to give more insight our struggles. Once I took to my various chronic illness support groups, I knew my idea was wrong. Looking at each notification, comment by comment, I knew these would resonate in your core. Each person's experience was eerily similar. We all lost something important to us, our health. Each person had a part of them that was destroyed or taken from them. That's a hard pill to swallow. I think I'll wait to add my two cents into this. Reading the experiences below shook me to my core, I hope they shake you too. Each response is from a real different person, all of which share at least one of my diagnosis, and more of their own.
"If you only knew...."
"I wish I’d known about the illnesses I was born with, and not called a lazy, attention seeking hypochondriac when I was a kid. I was legitimately ill and no one believed me when I described my pain." - Jade Sage
” I think I would’ve like to know that doctors don’t know it all, even when they act like they do. So it’s okay to question their decisions or get a second opinion or openly advocate for more testing/treatment when a doctor doesn’t want to try. I wonder if I would have fought harder - gotten answers sooner - had I been told that doctors aren’t always right, and are actually, frequently wrong.“ - @rebelious_story on IG
"There is so much I could say! I wish I had been diagnosed as a kid when problems first started, to avoid doing permanent damage to my body (which inevitably happened.) I wish I knew that there wouldn’t be any “getting better,” that my body is fundamentally flawed. I wish I knew that its’s okay and that I need to take each day as it comes. I wish I’d know to always expect flares and bad days, know what triggers my symptoms to worsen. I wish I’d known I had a genetic condition before I had my daughter. I wish I’d known that even after a diagnosis, I’d still spend my life fighting with doctors to take me seriously" - Karly Schwab
"I wish I'd know difficult it would be to be treated and taken seriously, especially for a diagnosis. How exhausting it is just to advocate for yourself. Toss in being a POC female and you’re really going to have a rough time. Also, when researching and gaining knowledge, dumb yourself down giving the key points to your physician so they can figure the diagnosis out. After all, they spent the years going to medical school, and some will let you know that if you seem know what you're talking about."- Jessica Muoth
" Some days your best won’t be good enough and you have to be okay with that."- W.I.
"That you will literally mourn the person you once were and how hard it can be to accept the new you." - Amanda Downey
" Sometimes saying, “I don’t want to do/go/participate” is me protecting myself from showing others that I can’t physically do whatever it is. I would rather be seen as stand-offish and a little cold than physically too weak to participate. I wasn’t ready for this level of limits since I was a very strong active child/teen. I fell apart pretty quickly in my mid 20’s and I still have the mindset that I can power through if I’m stubborn enough. It destroys my self confidence when I’m wrong and kills my body when I try." - Tracy T.
" That everyone will leave. Friends first, family, most of the doctors you'll be rejected by them all. And there's no vindication when you have a diagnosis they don't come back " - S.F.
" I didn’t realize how much having a name to what I was experiencing would help from a mental health point of view. I just wish there was more awareness, so people don’t have to go 28 years feeling like they are crazy. For the longest time I thought I was crazy, that what I felt was what normal people felt all the time, and I just complained or was being dramatic. I spent years feeling inadequate because I could never keep up with others. I even lost my dream job due to an injury that shouldn’t have been as bad as it was. The validation I felt when I learned I had EDS and what it was, was overwhelming. It completely reframed my life. It made so many things click and explained so much, and the best part was it was proof I wasn’t crazy, or faking, or lazy (okay I’m a little lazy). "- Anonymous
"I wish someone would've told me growing up that the pain wasn't all in my head. I was convinced I was either crazy or possessed by demons by the age of 9. I wish I would've known that doctors aren't always right because I believed them when they said nothing was wrong with me. My parents believed when the doctor told them I was just seeking attention. I wish I would've been told that there was an answer out there. I might not have resorted to drugs the way I did. But drugs didn't judge me for hurting or for needing them. Drugs made me forget about the pain in a time when no one had another option for me. Drugs destroyed me for a good chunk of my life, and I truly believe that it all could've been avoided. I just wanted someone or something to acknowledge my suffering. I found my way out of that life by myself and just accepted that I would always feel this way and that no one would ever understand. Then last year, I stumbled across a little video on YouTube. I had found someone who understood. I had found an answer and problem all at once. In the video, she said that not all doctors will look into it or believe you about your own body. Her words rang true for 6 months(short time for most people). I finally found a doctor who listened and cared.I guess the final thing I wish I would've known is, there is hope for understanding and community. The doctors don't make the pain go away, but they provide tools that can offer a livable life. " - Whitney Hollis
"That sometimes we can’t help but become the parents we hated (that stayed in bed all the time) because now you stay in bed all the time because of things that don’t feel like your fault - painsomnia, (Insomnia due to pain) fatigue, and deep depression. That even when you feel awful you won’t 100% admit it to yourself because you still know others have it worse (as if that devalues your own struggles.) But on the plus side, it means you can identify better people in the world. All of my friends have understood my illness and the few that didn’t left at the start. If people can’t understand a simple painful disease like ours, how can they understand complex mental health issues etc? If someone is willfully ignorant and doesn’t try to understand the EDS, then they aren’t worth spending time with as they will probably be just as ignorant over other more personal issues. " - Sophie Bond-Davies
“I wish I knew that doing gymnastics likely contributed to making me worse. I wish I knew I should have sorted out how to deal with not having an income!” - Kerri Paquette
“That some days death seems preferable over being a shell of the person you used to be. That it’s hard to grieve and mourn for your ‘old’ self. That some days I wonder what I could have possibly done to deserve this punishment.” - Ashley Adams
"I wish I knew that it was possible to get sick and never get better. To be sick for the rest of your life. I also wish I knew the side effects of Lupron ."- @chronicallykaylasue on IG
“Instead of focusing on what you have lost, focus on what you can/have learned! So much perspective about what really matters in life is found in chronic illness!” - Anonymous
“You have to be willing to stand up to medical professionals when they dismiss your symptoms or your research. Do your own research before appointments. Don't be rushed so much that you don't get your questions asked.” - Angie Osher
“To advocate for yourself early on. Don’t let people tell you it’s in your head as you battle this. This also includes the people in your life. Don’t let people use you as prey to sell products. It’s ok to leave a doctor to find another with more knowledge in the area you’re struggling. Mourning the body you use to have is hard. It’s real. Finding others with this struggle helped.” -Tracey Heyman
“I wish that my parents had heard "my shoulder feels like it’s coming apart" instead of "I don’t really wanna do the work today.” Having a name for the diagnosis and a place in that diagnosis for all of the puzzle pieces to fit is huge. I am not lazy. I am not crazy. The pain I am feeling is real.” - S.H.C
“Where to start. I wish I had believed in myself, trusted myself more and fought harder for a diagnosis and treatment before the damage became permanent. I wish I had known how exhausting in every aspect pain is. When you are always in pain, every single second of every day, how truly mentally, physically and emotionally exhausting it is. I wish I had known there was a whole world of people out there the same as me, having the same real issues as me and I wasn't alone. I wish I had known how badly treated people with chronic health conditions are by the very people they should be able to reach out to and trust to help. I wish I had known how much EDS (Ehler Danlos Syndrome) can steal from your life, often without you being aware of it. I wish I had known how much it can change your entire perspective on life, and how much it changes others perspectives of you. I could keep going but I'd be here all night." - Chermaine Beck
“I think the emotions that I experience are tough; fear, guilt (that I can’t be the person I used to be for friends and family, and to myself for not getting better!), loneliness, anger. The site The Mighty is very helpful for people who have chronic illnesses.” - Anonymous, 60 year old male
“That it's going to be a fight. To be taken seriously, to find medical professionals who listen, to adapt to new norms. That it takes a lot of energy to shift doctor to doctor, treatment to treatment. That insurance will be infuriating and medical costs will break you down some days. That you really need strong mental health support, a knowledgeable community around you, and family/friends who will ease the burden when you're too tired to fight for yourself.” - N.S.
“Having your chosen "family" be mostly online is absolutely OK. Social interaction IRL can be harmful, draining, and sometimes just not worth it but having friends you trust and talk to is incredibly important for your mental health.” - Anonymous
We've all experienced some sort of injustice by the healthcare community, some more than others. Most of us, as myself, were told we were crazy,sometimes for years. Most of you are aware of how piss poor our management of mental health is today. Now just imagine it. Our ailments have been pushed into this category of mental health where we were ignored beforehand, now we are really being ignored now. Doctor after doctor. "It's all in your head," slapped on you again and again. This is a tragic issue. This post isn't to poke healthcare with a stick and give blame. I write this post to simply open your eyes on these injustices. We are told to cling to medical professionals, yet a majority of them simply don't bat an eye. When you experience a cold shoulder from someone who's chronically ill, or they seem down, this is why. Sometimes we've just fought so hard it takes its toll. A handful of us have had years of hurt and confusion finally put to an end with just a simple word, Diagnosis. It's crazy to think that something so small as a phrase " you have ____" has validated so many of us. The folks you have heard from above are from all over the world ya'll. This isn't just a local issue. The issue of neglect or simple lack of investigation with "rare" illnesses isn't just here to you or I , it's worldwide. Let that sink in.
