Strengths and Weaknesses: Part I

December 28, 2011 at 11:02 am (Living With Chronic Illness) (, , , )

(Or “How to Be Helpful and Useful to Someone You Love With a Chronic Illness”)

This is the post I keep promising to write. It seems to have grown longer and longer the more I think on the subject. It gets a little rambling at points, but I promise it’s worthwhile. Part II will get posted later this week.

I grew up with a mother with a chronic illness. It didn’t help that my father suffered from rampant, untreated mental illness until he, too, had chronic COPD from smoking three packs a day. I grew up with many adults wanting to reach out to me and my family, but feeling awkward about how to do it in such a way that didn’t feel patronizing, belittling, or making us feel like some sort of obligation or hardship on them. I’ve seen a lot of attempts, both good and bad, by people who deep down wanted to do something good and useful for our family.

I remember once, when this woman decided we needed help cleaning our house. Now, granted, I grew up in a very cluttered house. We tried to keep up, but my mother was physically incapable and my father was emotionally disengaged; so as children, we didn’t really know how to take the reigns and put forth an effort. So there was this woman from our church who decided to come forward and organize our house. The fact that we needed the help was undisputed. The fact that this was a good way for her to show her love for us is also not in debate. But how she went about it?

She came in the house with another woman whom we didn’t know. I’m still not sure who this other person was. And to be clear, the woman wasn’t a close family friend, either – she was just some woman from our church. We knew she was coming, and our mother had warned us that we’d be expected to help her; when she came in, we were all generally ready (as ready as young children faced with a day of chores in front of them could be). But she decided that, I guess in some sense to make it feel like a luxury, that she didn’t want our help. My younger brother and sister felt relieved, but it just made me feel kind of odd.

To make a long story somewhat shorter (Too late!), she came when it was convenient to her (I seem to remember my mom was in the middle of home dialysis when she showed up), she bossed us around, threw away stuff that we valued because it looked like trash to her, put things away in places that we never found again, shamed us about the cleanliness of our house through her words and attitude, and by the time she left, we all felt terrible. Granted, it was nice to have a clean house, but the price was too high. I know I didn’t go to church the next Sunday, and for the rest of the time we went to that church, I avoided the woman. (She always made comments to my sister, who suffered from chronic asthma and coughs growing up, which she hated and eventually drove her away from attending church altogether).

The point of me telling this story in the beginning of this entry is to illustrate that it’s not just what you do for someone with chronic illness that matters, but the spirit and attitude that you bring to it matters just as much. I’ve had people come over and bust their ass for me in a way that I have been eternally grateful for; I’ve also had people do tiny things for me and then they bring it up every single time we hang out socially, making me feel like I’m an invalid who can barely wipe my own ass.

So this is where I give you the post I have been promising for some time, called “Strengths and Weaknesses”. The reason I call it thus is because after you decide that you really do want to be of help to someone with a chronic illness is to find out what their strengths and weaknesses are. By offering to do something that is actually one of the sick person’s strengths, you invalidate their autonomy – when someone offers to help me out of a car, which I can do on my own, it illustrates to me that your internal image of me is of someone who can’t do that. In the same vein, teaching classes at events makes me feel like a human being; when someone tells me they didn’t or won’t book me because I get sick a lot, I understand their decision, but I would like to mention that I have canceled teaching events all of twice in the years I’ve been doing it, and that’s partially because teaching makes all of the time at home feeling like crap worth something. So canceling my teaching gig is not “helping”.

It’s important, therefore, to engage someone in a conversation before deciding how you wish to help them, or even just remind them that you’re a part of their “team”. There are lots of little things you can do – send a card, call and talk to them, bring over some food in a container you don’t want back, pray for them, have your religious group do a ritual for them or something similar. There’s a book someone bought for me (because I asked on Facebook), called “Beyond Casseroles: 505 Ways To Encourage A Chronically Ill Friend” by Lisa J. Copen. It was definitely written for a Christian audience, as some of the “ways” are actually scriptures, and some of the other “ways” have scriptures in them, but there are some suggestions that are actually worthwhile, like:

21.Ask, “Do you have an errand I can run?” before coming over.

41. Accept that the chronic illness may not go away. If they’re accepting it, don’t tell them the illness is winning and they’re giving into it.

73. When they say, “I’m fine” [or my version, “Hanging in there.”], say, “No, I mean how are you really? I know what fine means.”

94. Respect their need for privacy and personal space. Don’t assume that they are lucky to have you as a friend and should always drop everything to accommodate your need to extend kindness.

163. Don’t let the fear of not knowing what to say keep you from being in touch.

228. Bring over a homemade dessert when you know they’re having company.

280. Recognize that what they could do yesterday may not be possible today. Don’t question that. Every day is different.

313. Realize that the person living with chronic illness and pain probably needs you much more than the one going through a short-lived crisis. Many people are probably ministering to the one in the much publicized crisis.

[I changed all the gendered pronouns to neutral ones. In the book, the author goes back and forth between he and she, although I think she uses she more often, and many of the suggestions assume that the person with the chronic illness is a woman, since the author was writing from her own experiences.]

So that’s a taste. The book might be disappointing to someone looking for 505 hands-on things they can do – many of them are more about the way you think, interact, or expect of someone with a chronic illness. And like I said, some of the ways are little more than scriptures, which isn’t so useful if you aren’t Christian. (I also found it offputting that the first five pages of the book are all accolades – I get it, lots of people like your book – there’s no reason other than ego to print that many, especially since there are more on the cover!)

Overall, I liked the book. It did have some solid suggestions of what someone who feels completely helpless or overwhelmed can do to help someone with a chronic illness out. It gives a range of things, from just ways of thinking or praying, to little hands-on things, to big projects like getting your friends to raise money to send your sick friend on a vacation. I don’t know that I would give it to friends; most of my friends aren’t Christian and might find the many scripture quotes repetitive and unhelpful. But if you can look past that, it’s a cheap little book you can pass on to others (or buy in bulk) when someone you know wishes they could help someone but doesn’t know how.

End of Part I.

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4 Comments

  1. Eric S said,

    Perhaps the thing to remember is that helping another is not about your ego but that person?

  2. marie said,

    Utterly amazing. Keep up what you do – it’s touching more people each day.

  3. Kel said,

    I get #73, but also find it a passive-aggressive tactic. If I say I am fine, than please take me at my word, I am telling the truth – even if I am limping and clearly in pain. I will be honest and let you know if I am having troubles that I need to talk about/or need help with.

    And if I ask how you (generic you) are and you say fine, than I am going to believe you. If you (again generic) want someone to ‘make you tell how you feel’ than perhaps you should hire someone for that (a therapist).

    Thanks for sharing all of these posts! I appreciate being able to read them!

  4. Strengths and Weaknesses, Part II « Dying for a Diagnosis said,

    […] Part I can be found here. […]

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