A Day with Chronic Health Problems

You may know someone (or be someone) with chronic health problems.  They are strange things.  Often, when I am out at church or the store or an event, I look just fine.  I'm not in a wheelchair; I'm not wearing a cast or using crutches.  People often respond to chronic illness people with , "But you don't look sick!"

I have several friends with chronic health issues.  Thought theirs' are different than mine, I think one thing is very similar.  We don't like showing the world that we are struggling, and often pretend or fake-it when we're around people.  I have one friend who mentions that she never looks sick to people because she only gets around people when she's not feeling sick.  Exactly.

So, because I likely won't ever bring it up to you in person at church or a party, I think here would be a good time to take you on a tour of my day, so you can get a glimpse of what everyday life is for someone with a chronic illness.

My day starts often the night before, with me not being able to get to sleep.
*I set my alarm for 5:30am, when I wake up, take a pill, set my alarm for 6am, and (hopefully) go back to sleep.
*6 am I get up, take more pills, eat my first snack, then try to go back to sleep until I either make eggs for Brian and Daniel before school (if I'm doing well) or until Hope wakes up (if I'm not).
*9 am next snack, steroid inhaler, pill
*12 noon, lunch, more pills, I'm supposed to rest after this but I often don't because I want to get things done
*3 pm, next snack, tried exercising around here but I can't seem to do without flare ups so it's a no go these days.
*6 pm, supper, take vitamins and supplements, if I remember
*8-9 pm, more pills, steroid inhaler, last snack

Now, this is my schedule if the day is normal and not too much extra is going on.  If there's a big activity, or we're traveling, or I'm sick, I have to change my eating schedule and medicine to fit the situation.  The busier things get, the more often I have to eat, or the more I have to eat, to keep my blood sugar stable.

And obviously, if my asthma flares up, or I get sick and need more steroids, or we were late for a meal and my sugar is crashing, everything changes then, and I spend that day and usually the next trying to stabilize again.

I live by the clock, and if you ask me at any given part of the day what time it is, I likely know.  Stability for me means not missing a meal by even fifteen minutes.

I have this fear that people will assume I have underlying intentions when I have to say no to an activity or get-together, or have to cancel something because I got sick.  Sometimes I will do things I shouldn't because I don't want people to think badly of me.  This is something I need to work on.

Learning to live with chronic health problems is a challenge, not only for the person themselves, but for those who love them.

So here's some advice to take or toss as you see fit:



For the person with chronic health problems:
1.  Stop worrying so much what other people think of you, and admit that you can't keep up.  I know this is hard!!
2.  Remind yourself daily that your value is in your worth in Christ, not in your level of activity.
3.  Change your idea of a successful day.  I used to think it was one where I accomplished a lot.  But God is teaching me that a successful day is any day I am walking closely with Him.  If I get through the day right with God and right with those around me, that is successful, even if I spent the entire day in bed.
4.  Ask for help.  And be clear and direct about what you need.  Humbling, I know!  But not doing it makes you overdo it, and then everybody suffers.
5.  Don't get angry that people don't understand.  Maybe it's your job to help them understand by being real!  Remember that people with problems different from yours are as difficult for you to understand as your condition is to some others.  Show grace and be open about what you're going through (not whiny open, just informative open--people don't understand what they don't know).





For the friend or family member of someone with chronic health problems:
1.  Don't decide they are faking it.  Even if you think they are, talk that over with the Lord and leave it with Him.  Show grace to the person.
2.  If they're going through a flare up and you want to help, show love in the way that matters most to them (the 5 love languages are quality time, words of affirmation, touch, acts of service, and gifts).  For one friend, coming to clean their house would be amazing.  Another might love a card or note (I love hearing from you all on the blog and Facebook--it makes my day!).  Another might just need a hug or a prayer or a visit.  Your kindness matters so much.
3.  Pray that they will have contentment and peace.  God will use the problems for His glory if we have the right attitude about them.
4.  Give them permission to feel badly.  This sounds strange, but I hate being "less" so much, and I really hate admitting it to others.  Especially at holidays and big get-togethers, I love it when someone tells me I can go rest and it's okay.  It's hard to miss out on things, and even harder to do it when I feel like people won't understand.
5.  Ask specific questions.  My friend with MS recently told me someone came up to her and asked, "Are you feeling better?"  She couldn't decide how to answer.  Was he asking if she was feeling better than she had this morning, or earlier that week when she flared up, or was he asking if her MS was gone, or. . . ?  You get the point!

There's my 2 cents worth.  Feel free to comment and add your own thoughts and suggestions that you've learned, either from being unhealthy or caring about someone who is!

A sincere thank you from me to all of you who have helped me live with this for all these years.  You are appreciated!
Kim