Ask the Advocates: Invisible Illness & Daily Life Part 1
For someone with IBD, "You don't look sick" can be one of the most frustrating things to hear. Even though the symptoms of IBD can be frequent and severe, outsiders may not know what you're dealing with, or how difficult it can be.
As part of Invisible Illness Awareness Week, we asked our Inflammatoryboweldisease.net Advocates, "How does living with an invisible illness affect your daily life? What message would you like to share to explain the truth about living with an invisible illness?"
Check out their responses:
Even when you are in "remission" or having a good day with IBD, it's still a part of every single hour of every single day. Every decision you make can impact your disease. Should you start your day with coffee or will that exacerbate symptoms? Stressed about a work project, presentation or personal situation--it can all cause you to feel symptoms and pain. Wonder what to have for meals, should you play Russian roulette and go for what you're craving or stick to a safe food? No matter how many years you have IBD, you learn how to read your body and your disease, and you evolve because of it. But, that constant inner conversation always remains.
Living as a mother with an invisible illness affects my daily life in every single way. It affects how people perceive me and my family. It affects my relationships with other parents, with my child and my self-esteem. It affects my effectiveness as a parent and caregiver. But those are both positive and negative effects. Sometimes I am able to be an inspiration and a source of knowledge for others. In ways, it has brought me closer to my son and has taught me clever ways of getting around parenting duties in a creative way. But it also can be frustrating with the constant reminders that I am a patient, that I do need extra time and that my body is as old as the oldest person in the room. It forces me to figure out how to create a delicate balance throughout the day.
Right now, I'm currently so lucky to be medically managed by a biologic. This means that while symptoms don't plague my daily life, I am constantly vigilant about my health, always thinking about the balance between living and being careful. My disease is always threatened by stress, so managing that aspect is incredibly important to me. I use a combination of counseling, meditation, crystals, and essential oils to naturally keep as calm and even-keeled as I can.
One message I would like to share to explain the truth about living with an invisible illness is just that - it may be literally 100% invisible to you that I have Crohn's disease, and that makes me thrilled because that means that you're seeing me for me and that I'm lucky enough to maintain medical management, but you have no idea how much I am reminded of my disease every single day. By the pills I take in the morning and at night, by the port that is surgically implanted under my collarbone, by the saline infusions and Remicade treatments I sit for every few weeks, by the constant calculation of how much energy I've used for the day and how much I have left, or by the way it takes me so much longer to recover from a late night, early morning, or full day than it should.
Living with an invisible illness affects me on a daily basis, from the time my eyes open in the morning to the time I try to get ready for bed, it is there. Whether I'm dealing with fatigue, joint pain, or GI symptoms associated with IBD, it affects some aspect of my life. I think it is important to acknowledge the truth about living with an invisible illness is that it sucks. People will look at you without understanding why you feel so lousy. Some of these people will know exactly why and it still doesn't register. At times, you will do the same thing to yourself. Not being able to see why you feel so awful is hard, we are visual creatures of habit. But remember this, there are good days scattered amongst the bad ones, and there's nothing better than collecting the good ones and savoring every moment along the way.
I'm lucky that sometimes my physical symptoms don't get in the way of my daily life at the moment. For someone with IBD, I don't use the bathroom as much as many do! But the psychological impact is huge and that's what people don't realize. It makes me worry about a flare-up, fear socializing and there's always a worry of what is around the corner.
Share your experiences
How has living with an invisible illness affected your daily life? What do you wish others knew? Share with us in the comments or by submitting your own story.
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