Guest Post: Chronic Illness Life is Hard; From Withdrawing to Engaging

Nothing is as it seems. Seriously, stop and think about that for just a moment. One of my most favorite quotes is “Be kind. For everyone you meet is fighting a battle you know nothing about”. My point being pretty simple…don’t judge. You never know what the person next to you is going through, thinking, experiencing, feeling…l could go on and on. I have Crohn’s Disease and was diagnosed 15 years ago. I feel that each flare changes us. No single flare is the same as the last one…or the next one. Along the way you learn techniques to help yourself. Whether it is by asking different questions, communicating with your doctors better and/or by learning to swim through the sea with your head held above water.
​If I had to put a time frame on my current flare, I would say that I have been having symptoms and have experienced short periods of relief since August 2012. I ended up with a colostomy bag and then I recently had it reversed. Was it a mistake to have it reversed since now it seems that my body hates me? Who knows? All I know is that I have taught myself how to be the best I can possibly be. Of course, it is and I am always a work in progress.
​Flashing back to the beginning of my flare, I had never experienced anything of this caliber before. I was really scared and felt so alone. I was not plugged into the IBD world on the internet. I didn’t have anyone that I could turn to who really understood what I was feeling physically and mentally.
In life you do things that become a part of your routine. For me, staying at home was easy and it eventually became my routine. I only left the house if I had to. I became a sort of shut in. It was easier to clam up and not talk about my reality. Simply because I felt that the second I would say it out loud to anyone, well, that is when it becomes real.
That is where the fork in the road rests. To the left you have the healing journey or to the right you have the victim journey. It’s easy to become a victim of your own thoughts and perceptions of what people/doctors/nurses/family/friends are saying to you. Not to mention everyone has a cure or suggestion!


​On the healing journey you begin to go through the stages of grief. Anger, sadness…the whole nine yards. I feel that this has happened to me countless times. It seems that when anything significant with my health changes for the worse, I need time to process it all and begin again with the grieving process. What do I do? I do what is easiest for me…I clam up. I process. I hide in my house until I feel that I have processed it enough to emerge. This IBD/Invisible disease/Chronic disease stuff isn’t easy.​

On the victim journey you also go through the stages of grief. You’re angry, confused and can’t get over the fact of why this would be happening to you right now? I think that this is where the most growth can take place. When you’re feeling this way…speak! Don’t do what I do. Don’t hide or clam up…step out into the sunshine and connect with others who are going through the exact same thing as you are. Is it easy? Nope. How does that saying go? “Anything worth fighting for isn’t easy”.
​Once I sort of framed this “fork in the road” theory in my mind, I realized that I have a choice to make here. Each and every day is a choice. Left or right, which one will it be? I will be totally honest; sometimes I still revert back to my hermit ways. But in giving myself some credit here, I have reached out to countless individuals who are in different stages of their disease. I have learned so much valuable information just from reading, messaging and just overall being open about what is happening to me. I do talk therapy and even have a therapist who specializes in IBD! I don’t think that there can ever be enough support. I am passionate about IBD and helping others along their journey, even if I am struggling on my own. Each journey is unique in itself and I think that we can all learn a lot from each other.
That being said, there are still loads of people in my life who don’t have IBD and who really don’t get it. They think they do but they don’t. Sometimes I just want to seriously ask a person exactly how many spoons they have left for the day. Then I want to tell them that I have none left and to ask why they can’t even offer up some empathy? Then for a person to hear me ask or talk about spoons who isn’t familiar with the Spoon Theory probably thinks that I’ve really lost my marbles!
My point is really quite simple but easier said than done. Talk! Speak up! Don’t harbor those feelings and let them fester. Even if you have family or friends who aren’t willing to accept your disease, start small and try to tell them how you’re feeling. Reach out to those of us in the IBD community who want to help you! 

  Sometimes knowing that I’ve helped someone is the single thing that gets me through a day. There are so many support groups, Facebook pages, people with Twitter accounts etc. and all of them are there for you and for me. We IBDers are quite a special group…one that I am very proud to be a part of. Hopefully you’ll be hearing more from me as I continue to find my voice and navigate my way on my journey!

Thank you Lindsey Russel for sharing some of your story. I know I can personally relate to so much of this! 

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  • Sheila Bergquist

    What a great article Lindsey. A great point of view and good advice.

  • Sue Neighbor

    I, luckily, only have IBS but life is still hard, even if you know that no real damage is happening inside your body. I chose to go on, being very active, singing professionally and working as either a teacher or a children’s therapist until I retired at 65, when I continued singing and returned to teaching part time. Then at 72 I developed Temporal Arteritis and was taking tons of corticosteriods for two years. I finished out my 35 hour a week, 5 month teaching position fighting against muscle loss, extreme exhaustion and the wild ride of steroids until my inflammatory condition finally subsided, a year and a half later, leaving me well aware that there are some things you just have to pay attention to as you live your readjusted life. I am a year away from that, but almost four years older. MY IBS is worse, no doubt caused by the stress of the medications for the vascular condition, even though it is now (fingers crossed) gone. I am tired of accommodating to my body’s unpleasant demands and yet I have lost some faith in the this too shall pass philosophy, but I am trying – and stories like your give me hope that I can do this.