The Importance of Ignoring Hurtful Words as a Person With Chronic Illness
Oh dear, another name lunged at me and thankfully I did not own it. I let it skim the surface like water off a duck’s back. It was meant to hurt, to shame me, to make me succumb to beating myself up, shutting myself down and putting all my pain and hurt into cement shoes to be thrown overboard.
Maybe I would have fallen apart last year or maybe even six months ago…but not today. I can finally stand by myself and claim all the broken and shattered pieces, all the imperfections in my life. I own every time my mouth filter has failed me and my frustration flows out of my mouth before I can shut it down due to the grinding pain and endlessness of living with an invisible disease.
For many the daily torment of chronic illness pushes at us, derailing our desired journey to shred. I have learned after 47 years of having this incurable disease to just keep on pushing through. We are called warriors and a warrior doesn’t stop when someone calls them names. It hurts deeply, that’s for sure, but we warriors know the truth and we keep going. We find that inner herculean strength that keeps us fighting and going into battle with our swords raised and our heads held high.
“Stupid” is another one of those mean names that comes to mind, as well as comparing my disease with another. I am reminded of the childhood song about sticks and stones. Silly but true. Since when are diseases competitive? Is this a competition and no one told me?
What do you do when hurtful words are hurled your way? Do you allow them to penetrate the protective shield we all carry? Are you frozen by them? Giving them power to hurt you? If so, please stop. Stop in your tracks. The words are said by people – even though they may be family or people close to you – who have never worn your shoes, never felt that fear when going for the next test, when our bodies go left when they should go right, when medications stop working and when you feel isolated – all things this messy life with disease can cause.
Maybe it’s their way of saying, “I can’t deal with your illness” or to shut you down because you are brave enough to speak your truth and they are too scared to listen. It takes a big-hearted person to be empathetic and compassionate to us – we who struggle every darn day. We look great on the outside, sometimes, so that can throw them off. Just remember, it’s about them, not you. What we experience is true and very real.
I understand, because I’m one of you. I have unrelenting Crohn’s disease with short bowel syndrome that keeps me constantly in the bathroom. The unrelenting grinding pain that makes me want to scream, and the pills…oy, the pills. Medication that makes me sick as a seasick sailor in a small boat in the big churning ocean. Waking up is a never-ending marathon race to the bathroom, many times over. I want one of those watches that counts my steps to the bathroom.
So in the end, lean on those who love and support you through their actions – words are a dime a dozen. People who will physically be by your side, hold your hand and tell you it’s gonna be OK, even if you don’t think it will be. Just the presence of someone is healing. Having them hold your hand is a priceless gift. To know they are there out of concern and love for you. If they can’t be there physically, you’ll know their truth is real and that they really do care because they are the ones who call, who send even little things and show how much they care.
Chronic illnesses are tough – no way around it. One disease is not better or worse than any other chronic illness. We are all in it together. Seek out those who are tender and soft with you. My team is my mom and her husband, my adult children and my best friends. They are my Team Crohn’s. I know I can do this, and so can you. Find your team.
We cannot physically afford the negative and demeaning words carelessly said by those who have no idea of what our life is like. They have no right. And we can change the dialogue. Turn to your own support group, even if it is just one person. Because having one person who believes us is all it takes to make this life not so bad.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via jetFoto.
I was diagnosed with Crohn’s disease when I was 13 yrs. I was a tomboy who rocked party dresses. I was curious, loved my big Siamese cat called Shabooey and Surf, my soft shelled turtle. Curly Auburn headed, petite and topped off with enormous dark chocolatey brown eyes. The day the pain began, that little full of life girl, went dark...no one believed me. First bowel resection was in 1973...I had no idea how sick I was because back then or at least in my family, you did not speak of anything that wasn’t all shiny and bubbly. Thru the many, many years of confusion, denial and ignorance...I survived by skating on the surface of my life. Married, two beautiful children, a divorce and a successful career I loved, hit the fan and all 4 tires blew at once. In 2002 I became officially disabled. I had to stop working so I left the big city of SF and moved back to my hometown. I bought a pretty Victorian home and went from Corp executive to jeweler. After my 8th bowel resection, and blasting thru every drug on the market, tacking on more delightful diseases; sarcoidosis, primary immunodeficiency, Sjögren’s, and the list goes on I decided enough is enough, for Pete’s sake. I opened Heartandhammers.etsy.com and became a tiny business owner. And then I rescued a ginormous, sweet 110 lb dog, Greater Swiss Mountain dog who I named Ollie, a darling little sprite of a kitten, aptly named Skeeter and my older, mature Ruby. She is a calico with all the grace of a queen bee. We are happy some days, others too much pain. Bearing the weight of too many diseases takes the wit right outta me. I’m single so I do my best to balance everything but plain and simple...it’s really damn hard. I’m writing this from the hospital..I’m a little drugged up, sleep deprived and feeling lonely but...I’m a warrior now. So I’ll do what needs to be done and get home to my little family of 4 legged loves....rinse and repeat.
pamelasquires