We need to start to talking about chronic illness. Persistent diseases can push a person to their limits, both physically and mentally. By raising awareness for these issues, we can allow individuals who struggle with chronic illness to feel validated in their challenges and supported by others who understand what they are going through. People who do not have a prolonged condition also need to be educated in order to become better allies for others who battle illness.
I've lived with a chronic illness my whole life, and as a result have lost my entire colon. After my large intestine was removed, most people I knew assumed that I was "cured" and that my struggles had ceased. Unfortunately, chronic illness has no end game, it can wax and wane but it does not disappear. There is no magic pill, dietary change, procedure, or surgery that can just take it all away. Believe me, if there was, I would have taken it long before someone asked. As an ally of someone who has a chronic illness, it is important to consider how the person may interpret your words. It is never helpful to make suggestions of things for them to "try"; it is never helpful to press questions like, "When will you be better?", "Is this your last surgery/procedure?", "What's next?". The answer is that nothing is certain and chronic illness is unpredictable. I never know what is coming next, and that can be scary. It is better for you, as an ally, to ask how you can support your loved one. Treat them like a normal person; do not allow your view of them to be clouded by the fact that they are sick. I find myself weary of people assuming that I am incapable of doing things for myself and that I am frail. Let me take the lead and communicate my own limitations before assuming them. People with a chronic illness often just need a safe space to talk about their feelings and process their experiences. As an ally, you can be that person for your loved one. Recently, I've been battling severe gastroparesis, a condition where the stomach becomes paralyzed. No longer able to eat, I rely on tube feedings directly flowing into my small intestine. My already low body weight has dropped by twenty pounds and I have to battle dehydration and electrolyte imbalance every day. I have spent the past few months in and out of the hospital; I have undergone numerous tests, procedures, medications, and surgeries that have produced no results. Currently, I am facing the possibility of a more invasive surgery in attempt to achieve some level of normalcy and regain the ability to eat again. However, these surgeries are not a guaranteed success and come with a unique set of risks and serious life changes. This is the reality of chronic illness, a painful truth that must be unveiled in order for people to begin to understand what invisible illness is really like. Allies, break out of your comfort zone. Changing the way that society views and responds to chronic illness is a collective effort, and cannot be done without your support. Educate yourselves, allow yourself to be challenged and to feel uncomfortable. Help be the change you wish to see in the world.
4 Comments
Karen cutter
11/17/2017 03:32:39 am
Jenna,
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Steven Fair
11/17/2017 06:10:54 am
I know this is one of most difficult things you have ever faced. Just remember how many people care about your well being. Any one of us (and I think you know which group I'm talking about) is willing to listen and be your support. We all really care about you and we know you are fantastic.
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JoAnn
11/17/2017 01:22:32 pm
I hear you. Your words are not empty or in a vacuum.
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Kim mays
10/9/2019 08:15:52 pm
Thank you for putting into writing what so many deal with. Best of health to you as you struggle with your illnesses and chronic conditions
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AuthorWelcome to Sickness and Society! I'm Jenna Lee, and I hope to work to create an open dialogue about chronic illness that leads to change about how society views illness. Archives
November 2017
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