As a person whose lived with Sickle Cell Disease for forty years, I’ve had my illness impact many friendships in positive and negative ways. It makes all the difference when you have friends who understand and are considerate about your condition. Indifferent friends, however, most certainly add bricks to the walls we build around ourselves.
About four years ago I went on an outing in the mountains with a group of friends. Each of them knew I had Sickle Cell. While driving to our destination, one friend complained how painful it was to move because his muscles were sore from working out the day before. I said to him, “Now you have some idea what a Sickle Cell pain crisis feels like.”
His reply was, “A what?”
My heart sank a little bit. I had been friends with this young man a few years. He frequently came to my house. Though he knew I had Sickle Cell, though we were friends, he was completely ignorant of what a Sickle Cell pain crisis was.
Later that day when my friends and I arrived at our mountain destination, we did a lot of walking. As a result of the high elevation, my reduced heart function and lung capacity, I wasn’t able to keep up with my friends. I walked slower and was further behind them. In our group there were about ten people who knew about my health condition, and several people whom I had just met.
You would think my friends would have been aware and concerned that I fell behind. But they weren’t. Of nearly a dozen friends, it was a friend’s friend whom I had just met who walked with me at slower pace. A stranger was more considerate than friends I had known for years. It’s events like the two I just shared that cause Sickle Cell patients to put up walls.
On the flip side, I’ve had many considerate friends. Something I often say is, “I can make plans, but my body can change them.” People who are close to me know that everything we plan is tentative. It doesn’t matter if we’ve scheduled something six months ahead of time; a pain crisis could strike at the very last moment and shatter my plans.
I think of one young woman in particular, Natalie; I marvel at her patience. I had asked Natalie out on a date. Unlike most girls, she said yes. The big day came. But hours before I was to pick her up, I was hit with a terrible pain crisis. I was in no condition to go anywhere.
When I called to tell her, she was amazingly understanding. So we tried again for the next week. Unfortunately the exact same thing happened and I had to cancel on her not only a second but a third time! I still can’t believe she gave me the time of day after that. Incredibly, she gave me a fourth chance. Thank goodness my body cooperated and I was finally able to take her out. She and I became very good friends. Other people have not been as understanding. Some friends, when I’ve had to repetitively cancel on them, stopped calling or lost interest.
For everyone living with Sickle Cell Anemia, it is an unfortunate reality that our body can change our best laid plans. Friends who refuse to understand why this happens are the ones who, if we allow them, cause us to built barriers. It's the people who understand this reality are those with whom we can build meaningful relationships with.
To any friend, family, or love interest who is close to somebody with Sickle Cell Disease, I ask that you please be patient. Your friend with SCD is going to have to cancel your plans from time to time; sometimes very frequently. Know your friend is just as upset about not going out as you are, perhaps even more so. For you, it may be an inconvenience; for them, it's a frustrating byproduct of living with a chronic illness. Be forgiving and tolerant. Doing so will benefit your loved one in more ways than you know.
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