How to Choose Hope When Chronic Illness Abounds

It would be ludicrous for me to say I understand what you’re going through. When you have a chronic illness or a child with a chronic illness, there is practically no way for anyone to truly understand the depth of your daily distress or the breadth of your pain. You may be walking through some of the most difficult days of your life. You might be finally feeling like you can breathe again. Even though I cannot fully understand…even though I do not know what your circumstances hold…I do know this…hope abounds.

Hope is not a fuzzy feeling. It’s not an illusive mind trick. It’s a real and absolute assurance. It’s an understanding the future holds promise and good.

Not clear yet? Then, consider the opposite of hope: despair. We’re all familiar with despair. It comes in varying forms and levels. It’s the feeling there is no way out, no way forward and no assurance of a better future. It’s the “end of the rope.” Different than depression, despair is a sense that difficulties cannot be repaired and forward momentum is impossible.

I think that’s the core of the issue…to choose hope, we must believe forward momentum is possible. We must believe there is a brighter day. We must know that in the midst of our troubles, we stand on solid ground, and not on sinking sand.

Maybe I recently mentioned that one of my mast cell friends recently said she felt better, calmer after talking with me? I quickly suggested to her this feeling has nothing to do with me being a good, calming person…but everything to do with my relationship with Jesus. For me, this friendship with God is what allows me to always choose hope. Because I know God is always with me, I can claim the promise that He has a good plan for my life AND a HOPE for my future (Jeremiah 29:11). I can choose hope, because I know there is always a way through.

Sound sappy? Maybe it seems that way. But I can attest to the fact that it’s not. While I still struggle with fear, anger, sadness and all manner of distress, one thing I do not struggle with is despair. Despite my pain, despite my illness flairs, despite my ongoing symptoms, I have hope. And this hope is not just the maybe-someday-things-will-get-better kind of hope. It’s the calm assurance that no matter what circumstances seem like at the time, God is capable of helping me handle them.

So how do you choose hope? You find your solid ground. Mine is Jesus. What’s yours?

Today I was brave. I got out of bed.

Today I looked chronic illness in the face. Today I was brave. I got out of bed.

So…it’s been a long week. For the last several years, I’ve had the opportunity to volunteer behind the scenes at a national leadership conference called the Global Leadership Summit as the assistant video director. I love what I get to do! I call cues for the camera operators and the director to ensure the presentation is as seamless as possible. Fast-paced, high-pressure environment. It’s one part planning, one part strategic thinking and one part leadership.  It kinda comes naturally to me.

But…to volunteer, I must travel by airplane, sleep away from home, figure out what foods are safe to eat while traveling and, because the satellite truck must keep the equipment quite cold, I must endure some very cold temperatures. That’s hard on the body when you’ve got a chronic illness. It’s a definite sacrifice.

And…after I got home late, I went right back to work the next day (Sunday), and my kids had their first day of school today (Monday). 5:45 AM. That was the time my alarm went off. That’s a TERRIBLE time for the alarm to go off when you’ve got a chronic illness. But dad is traveling, so I gotta do what I gotta do. Thank goodness for grandma and grandpa pitching in (thanks mom and dad)! The kids survived their first day back at school, and we’re all wrapping up for the night.

Some things are hard. Like getting out of bed. But they’re ultimately worth it. Do I feel great? NO! But am I infinitely glad I made the choices I did. YES! I don’t know what you’re facing today. Maybe there is absolutely no way you could dream of doing what I’ve done this past week. Maybe you could do more. It doesn’t matter. Because the truth is ultimately the same: Sometimes we must choose to feel sick, so we can experience a joy greater than our illness.

Today, I was brave. I got out of bed.

It was well worth it.

When Chronic Illness Flares into Worry

This weekend I had a chronic illness flare. Most people with mast cell disease call them attacks. And this attack once again introduced worry…

Because of my mast cell disease, I can react to normal everyday stimuli as if I were highly allergic. In fact, some people with mast cell disease describe it as living every day in constant low level of anaphylaxis. One of the more depressing reports I read recently suggested patients like me are “extremely ill” and live close to death’s doorstep. How encouraging. Not.

But even though that statement was from a new story where truth can often be sensationalized, this explanation of mast cell disease holds a kernel of truth. I can get extremely sick, and sometimes I am even worried that things could go really bad when I’m having an attack. For me, attacks can include trouble breathing, chest pain, flushing, headache, internal pain, full body pain and even (warning: TMI) GI distress. Most times it happens in a slow burn…unrelenting symptoms that leave me feeling sick, but able to function. Sometimes though, like this weekend, it happens quickly…extreme symptoms that make me feel like I’m going to explode from the inside out and leave me completely unable to function.

This weekend it was fumes from gym floor lacquer mixed with off-gassing from new carpet. Normal people might be annoyed with these smells. But me…exploding headache, nausea and a feeling like someone drained all the blood from my body (that’s called anaphylaxis – for which I took emergency meds). While I was able to make it home, load up on Benedryl and sleep, it left me unable to function for quite some time.

But what episodes like this also leave behind is something I don’t want to be a party to…WORRY!

People with chronic illness can easily worry. Worry, when they’re feeling good, whether or not they will get worse. Worry, when they’re feeling bad, whether or not they’ll ever feel good again. Worry they will not be able to participate in their family. Worry they will loose their job or their source of income. Worry their friends will not understand. Worry their family won’t either. Worry they will die.

Interesting thing is that worry does no earthly good! As Corrie ten Boom says, “Worry does not empty tomorrow of its sorrow, it empties today of its strength.” Worry (which is a form of fear) doesn’t do me any good. It doesn’t make me feel well. It cannot save relationships with my friends or family. It cannot supply for my financial needs. Worry can only cause all these things to become more difficult.

So worry needs to be kicked to the curb.

Yesterday I was talking to a friend who also has mast cell disease. She mentioned that she felt better after talking to me…that I had a calming presence. My response: that’s Jesus in me. Left to my own devices, I would be a complete worry wart. Because of God, I can take all my fear and worry about my illness, or anything else in my life, and give it to God. The Bible says, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God” (Philippians 4:6). That’s the cure for worry: let God handle it. I don’t need to carry around a weight of worry. God is big enough to handle any of my problems.

And yes, all those things I could worry about regarding my chronic illness might happen. I could loose my friends. I could loose my income. I could feel worse. I might never feel better. But I’m not worried. God’s got it. And He will give me the strength to handle each any every one of my problems as they come. For today, I choose to save my strength. I choose trust.