Reviewed by Phillip Waite, Ph.D.
How much support do you receive from the people that matter most in your life? I have been blessed with a very supportive wife, loving parents, great kids, and family and friends that may not always understand all aspects to being chronically ill, but accept me and love me for who I am. Unfortunately, that kind of support is missing from the lives of many people.
After my diagnosis, I’m not sure I would have made it without my wife. She was my guide and advocate. It felt at times as if a dense fog had settled over me and without her love, support and gentle encouragement I’m not sure I would have found my way out. I’m sure it was as bewildering to her to have a spouse diagnosed with a chronic illness, as it was for me in coming to terms with it.
Eventually we grew in our understanding and were determined to make our way toward our goals despite my health condition. It hasn’t been easy, but her support has been so important to me and the development of my own resilience. She is still my primary supporter, my partner in dealing with the inevitable flares and health challenges I face each day.
My wife and I are raising a family of four wonderful children without whom I cannot imagine my life. They are my everything and give me even more motivation and desire to live in the here and now. To be present. To live life to the fullest. Parenthood isn’t always easy, especially with chronic illness. Sometimes it limits my ability to be as much as a father as I would like to, but I do my best, and I’ve learned that all children really want is your best.
It’s funny, I really didn’t reach out to my friends much after I was diagnosed. Maybe it was because Crohn’s Disease carried with it such a stigma (later adding Fibromyalgia and Sjogren’s Syndrome to the mix). Maybe it was because I didn’t want my relationships with my friends to change and so I kept them in the dark. Maybe it was just a subtle form of denial or male ego. All I know is I wish I had reached out sooner than I did. If I had I would have been better off. I am grateful for my friends in my life today, who offer support, encouragement, and help when needed.
Here are a few questions to ask yourself about support in your own relationships:
Are your family and friends aware of your chronic illness and the daily challenges you face?
I believe it’s never a good idea to deal with chronic illness alone. Even if your family or friends aren’t very caring or empathetic, at least they should be aware of what you are facing. It is part of being true and honest with yourself. It also opens the door and gives them an opportunity to see how you are doing and be supportive.
What do you want most from your family and friends as it relates to your condition?
Do you just need someone to listen to your fears, concerns, and problems? Do you want them to ask how you are? Or do you want them to just “be normal”? Do you need physical assistance? It is so important for you to set expectations, otherwise they may be clueless in exactly how to help. Be specific.
How can your family be more aware of your chronic illness?
This question is related to the previous one. Do you want them to be more sensitive and understanding to your condition? Do you expect them to do research for you on new treatments, exercises and nutrition that may help? Do you expect them just to automatically know what to do? I know I have fallen into that trap. We often expect our loved ones to simply read our minds. What we need to do is help them clearly understand what kind of support we really need.
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