Tuesday, September 15, 2009

Invisible Chronic Illness: Turning the Tables

For most of my life, I've been the one with the invisible illnesses in my immediate family. My dad also deals with invisible symptoms, but when it comes to pain, I've held the monopoly in our 4-person family. That is, until four months ago.

While I was abroad doing dissertation research in May, I got an email from my dad saying that something had happened to my mother and she was in severe pain for an unknown reason. After a number of weeks and multiple doctor's and ER visits, she was finally diagnosed with sciatica - a very painful inflammation of the sciatic nerve, leading to burning pain in the lower back, buttocks, and legs. By the time they determined what it was, she was almost 100% immobile. Dad had to pack an ice chest with everything she needed while he was at work every day, and she couldn't walk across the room to go to the bathroom without help.

The doctors kept giving her pain meds and telling her that it would improve with time. Four months later, she still has virtually no mobility, won't walk without a walker or canes, and is in a severe depression. She's on meds, in physical therapy, but things aren't going well. This morning I was awakened after only 3.5 hours of sleep by a phone call from my dad, who was at his rope's end.

I must admit - being on the other side of the table is strange. My mother has never been sick in her life, beyond the occasional allergy flare-up or headache. It's strange being the helpless one, the one who wishes more than anything that they could take the pain on themselves to spare their loved one. It's given me the utmost respect for caregivers - those who, for years or decades, do whatever they can for their hurting loved one.

From our very limited experience, here's what I've learned about being a caregiver:

1. It's hard. Probably the hardest thing anyone could ever do. You have to be strong when you want to collapse. You have to be compassionate even when you are frustrated.

2. It's a true labor of love. If you don't truly, honestly, deeply, unconditionally love the person who is in pain, with a God-given love, I don't know how you will ever survive. But that love gives you strength when you both are weak, hope when you both want to despair, and joy in the worst of circumstances.

3. Caregivers need just as much care as their ill family members. We often forget that these people give 200% of themselves in being caregivers. They need support, too. Depending on how bad things are, they might need even more support than the person who is ill.

Celebrate the caregivers you know. Be there for them - offer to run errands, or give them time to rest by being there for their cared-for one. Be understanding when they're having bad days, or when they give in to despair once in a while. Let them know that they are loved for who they are. Pray for them constantly.

Care for the caregivers as they care for others.

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