Living with Chronic Illness

There’s nothing romantic with chronic illness. Andy has suffered from U.C. for the past five years that is only complicated by his hemophilia. He is strong to the point of mild self-destruction because of the way he doesn’t let his illness derail his plans. It’s one of the reasons I love him.But it can be hard to explain why he is feeling under the weather to those who haven’t gotten the background. Oftentimes, he will respond to inquiries about his fluctuating weight or tiredness with a “I was sick,” instead of the fact that “I am sick.”

Even with the challenges, we were able to move to Spain for a year and teach English. He played Lacrosse in high school despite the risks of being a hemophiliac. His ankles are now akin to that of a 70 year old because of years of joint bleeding and cartilage damage. So he gets around on a bike. Luckily he was in the first generation of hemophiliacs that was not exposed to HIV through his medicinal transfusions. Older hemophiliacs are dying. Luckily he gets health insurance through me because otherwise, the medicine would cost $1,500 every other day. You read that correctly. U.C. is different from hemophilia because there is no known explanation for the disease and the only cure is total removal of the colon (ugh.) Hemophilia was something to handle, manage and move on from. U.C. is a constant battle.

Over the past year, we’ve both been concentrating on the U.C. and getting him better; acupuncture, supplements, stress management, diet etc. He has good days and bad days although during a flare-up, it’s impossible to have a good day. He is a trooper and is currently working part-time, student teaching and going to grad school. He is also my extroverted partner who pulls me away from my books on the weekends and over to friends’ houses and on adventures.

Although I’m not planning a wedding, I stumbled into this post today on A Practical Wedding and immediately sent it over to Andy because of how deeply it spoke to me. For those of you who suffer from a chronic illness or have a friend/partner/family member who does, I think you will enjoy the honesty that comes from these words: http://apracticalwedding.com/2011/10/undergraduate-wedding-planning-with-a-chronic-illness/

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5 thoughts on “Living with Chronic Illness

  1. Jessica, this is the first time I’ve read your blog; it’s lovely. Thank you for your courage in speaking about this. People are very uncomfortable talking about illness and disease, especially at our age, and it can be hard to be open with others about it. It’s wonderful that you and Andy can be such a strong team together. All the best to you both,

    • Thanks Mai. Illness is a hard thing to talk about and it feels good to be truthful about mine and Andy’s experience. It’s been frustrating at times trying to explain why neither Andy or I are drinking at a party or why we eat special foods. But I’ve found that opening up has led to a tremendous amount of support from friends and family and it helps both of us realize that other people are trudging through the same difficult health situations. Thank you for your best wishes!

  2. Thank you for sharing, sometimes we fail to realize how many things are going on in each others lives. Reading the responses to the blog you referred to was intense & insightful. It is amazing how so many people cope with illness, whether physical or mental. The one thing I was reminded of was how important unconditional Love is for spouse & family. Love You Lots, Mom!

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