Secrets of Invisible Illness

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: POTS (Postural Orthostatic Tachycardia Syndrome) which is a specific form of dysautonomia (dysfunction of the autonomic nervous system). In addition, I have MCS (multiple chemical sensitivity), IBS (irritable bowel syndrome), postural diastolic hypotension, non-24-hour circadian rhythm disorder, Raynaud's, asthma, and allergies.

2. I was diagnosed with it in the year: 2005 (POTS) - earlier for others.

3. But I had symptoms since: 1998

4. The biggest adjustment I’ve had to make is: Giving up a lot of independence.

5. Most people assume: I'm much healthier than I am when I am able to go out socially.

6. The hardest part about mornings is: Waiting for the muscle aches, malaise, and fatigue to ease, though that doesn't always happen.

7. My favorite medical TV show is: Mystery Diagnosis.

8. A gadget I couldn’t live without is: My laptop. It's how I work part-time and do much of my socializing.

9. The hardest part about nights is: Being awake alone and knowing I will need to sleep all day.

10. Each day I take 2 to 3 pills & vitamins. (I tend to have uncommon reactions and side effects, so I'm not on many medications.)

11. Regarding alternative treatments I: Can even have severe reactions to "natural" remedies. One such attempt sent me to the ER.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. Prior to and during my diagnosis, it was extraordinarily difficult to cope with not being believed, but now that I have validation and a diagnosis, I'm grateful to still look like my old self.

13. Regarding working and career: I had no idea how much self-esteem and worth I gained from my career. Losing it was one of the hardest grieving processes I've ever had to go through. I felt lost and worthless. Readjusting the way I view myself, my work, and allowing God to impart my value as a person has been a challenging and humbling road.

14. People would be surprised to know: How sick I can be on "bad days" when no one sees me but my family.

15. The hardest thing to accept about my new reality has been: Losing my "old life," job, friends, freedoms, and feeling that people and opportunities pass me by.

16. Something I never thought I could do with my illness that I did was: Find satisfying and flexible part-time work from home.

17. The commercials about my illness: Don't exist. Though many people (especially young women) suffer from dysautonomia, there is very little public awareness about it. The closest it came to being public was when a member of "The Wiggles" had it and had to quit the group.

18. Something I really miss doing since I was diagnosed is: Playing music in an ensemble.

19. It was really hard to have to give up: My career and driving. Though now, after years of healing, I can do some driving.

20. A new hobby I have taken up since my diagnosis is: Pilates. I have also had more time to read and crochet, which I had enjoyed before but never had time to do.

21. If I could have one day of feeling normal again I would: Travel on an airplane and spend all day outside in hot weather biking, hiking, playing tennis, and being active.

22. My illness has taught me: That when dreams are shattered and I am weak, Christ is my Rock, my true friend, ready to help bear my burdens and strengthen me.

23. Want to know a secret? One thing people say that gets under my skin is: "Hope you feel better." or "Let me know if I can help." Those are usually polite ways for people to disengage.

24. But I love it when people: Keep in contact with me through email and maintain friendship with me even when I can't attend events, return phone calls, or have to turn down repeated invitations.

25. My favorite motto, scripture, quote that gets me through tough times is: "Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord." -Psalm 27:14 (Amp)

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."
- Psalm 73:26

26. When someone is diagnosed I’d like to tell them: Learning to live positively within your limitations is the key to enjoying life with dysautonomia.

27. Something that has surprised me about living with an illness is: How much relief came when there was no more professional and personal pressure to "do it all" and achieve.

28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me food, a game/movie, and offer genuine friendship with lots of laughter.

29. I’m involved with Invisible Illness Week because: The psychological impact of not being believed was excruciatingly painful for me before I was diagnosed. I felt like a failure, and many people looked at me as if I was a "slacker" because I suddenly couldn't physically keep up with expectations.

30. The fact that you read this list makes me feel: Encouraged that you learned something about my experience with dysautonomia, how faith in Christ has anchored me, and that chronic invisible illness is more complex and difficult than it appears.

My friend Rachel completed this list of 30 things on her blog, and so I thought it would be fun to do it too. It was started by Lisa Copen of Rest Ministries in honor of Invisible Illness Week, which is coming up soon!

The Battle Plan

It's funny how songs can get stuck in my head. I don't know why or how it happens, but sometimes one line of melody, one lyric that I happen to hear, gets caught up in my brain and plays on loop for a while. Has that ever happened to you?

It happened to me a couple weeks ago. I was reliving my high school days by looking up some 80s Russian pop music. "Luckily" I found the album and played all the songs. Unfortunately, one of those songs stuck around for a while and overstayed its welcome in my head. I'd just be sitting there and this nonsense Russian lyric kept repeating, round and round. I wanted to scream!

Fast forward to yesterday, and I was searching YouTube for a new concept I saw on the news called "literal videos." Apparently, people take wacky old music videos and redo the vocals to make the lyrics reflect the visuals exactly. A pretty humorous concept on the surface. I had a good time with some of the more innocent videos, giggling at some clever lines. But because the music is secular and the videos are sometimes dark and creepy, a few of the lyrics verged on unpleasant. No big deal right? Just some harmless fun. Well, it wasn't until I was lying in bed and the melody of one of those off-color lyrics started cycling through my head that I realized I'd relaxed my standards too far. So frustrating!

Ever since the adversity in my life has increased, I've noticed I have a lower and lower threshold to tolerate negative (anti-God) stuff. It's almost physically painful for me to hear or see anything that goes against God's Word. I literally cringe internally. I didn't use to feel like this, so one of my old childhood friends was really confused one day when I asked her to turn her music off in my car. It wasn't because I didn't want to be tolerant, open-minded, or kind. I just couldn't take the dark and negative lyrics that permeated her entire CD. She didn't understand and was offended. I realized that my struggles had fundamentally changed me.

About 10 years ago, I made a very important discovery: I choose what I put in my mind. I control my thoughts. Whatever I see, experience, listen to, or work on affects me deeply. When I see a disturbing scene in a movie, that scene can often pop up in my dreams later that night. When I spend a lot of time with people who are negative, I begin to feel and talk negatively. Conversely, memorizing a scripture verse will lift my mood and keep me grounded in truth. There's no room to be passive when it comes to my thoughts because my thoughts directly affect who I am and what I do.

When you're feeling stressed out about adversity in your life, do you ever have days where you feel like you've "been through the war"? I think that's a pretty accurate description for what most of us face when we are struggling with a major problem. The problem is discouraging. It threatens to bring us down. We think about the problem. We focus on everything that isn't going right. We see everything physically that is against us, and it's so tempting to give in to all the worry, the fear, the negative messages swirling in our minds, and give up.

But we have a choice! Our battle is not fought physically with real swords and shields. It is fought spiritually, in our souls and minds. That is why Paul said:

"For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms."
Ephesians 6:12

How do we fight in a spiritual war? We have to fight the enemy's weapons of discouragement, hopelessness, fear, and doubt with encouragement, hope, confidence, and faith! All of those things require us to be purposeful about what we put into our minds, what we experience, what we listen to, what we watch, who we spend time with. If I want to purpose to be encouraged, I need to think encouraging thoughts, listen to encouraging songs, and be uplifted by God's truth. Being in a battle gives me no choice. I either suit up in God's armor, or I will be a quick and easy casualty.

We're instructed to fight this way:

"We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ."
2 Corinthians 10:5

Taking each thought captive and making it obedient means having control over my mind and directing my thoughts constantly to obey God's teaching. It's the only way to win the battle on a moment by moment basis. Not doing this would be as silly as sending an army into battle with no training, no battle plan, and no weapons. That kind of disorganized chaos wouldn't survive a war. Similarly, I don't survive very well spiritually when I don't control what goes on in my mind. I'm easily attacked by doubt and naturally become disheartened.

In order to win the battle, I must have this goal:

"Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable — if anything is excellent or praiseworthy — think about such things."
Philippians 4:8

This command isn't to make us into boring goodie-goodies. It's to make us powerful spiritual warriors! It's a battle plan for facing the hardships of life. If I strive to place the truth of God's word in my mind, worship songs in my heart, uplifting relationships around me, and positive images in front of me, I will train my mind like a commander trains an army. I don't want to be a casualty of discouragement, fear, doubt, or hopelessness. I can defeat all of these through continually focusing on my King and Commander Jesus - the one who gives me strength.


(I included a new song in my playlist to the right which contains lyrics straight from Psalm 36:5-6. What better song to get stuck in my head today than one that will remind me of scripture - over and over again!)

One Pair of Hands

I had some very hurtful things happen to me last week, and it's been agony getting through the emotional pain. Sometimes I wish there was something like Motrin for the soul. Physical pain can abate for a time, but emotional pain is constant, gnawing, with no available respite. I found myself shifting restlessly in an effort to get some momentary relief, just to gather the strength to keep going.

When I was cleaning out my email inbox yesterday, I saw a forward from a long time ago with this song as an attachment. I don't like downloading forwarded files, so I had put it aside at the time. Interestingly, I ended up finding it when I needed to hear it the most. I looked up the song on YouTube, and as I listened, I felt such a warm and powerful comfort from the hand of God. It's worth a listen - especially if you like Unchained Melody by the Righteous Brothers. (At least, that's what I'm reminded of.) :)

What the Bride's Uncle Said

Sometimes the way I handle my anger sucks.

I have to admit it here before I can go any further because to be honest, I blew it last weekend.

To set this up, I need to first confess that I tend to stuff my stuff. That means that when I get upset about something or frustrated, I tend to stuff it inside rather than deal with it. I think in some warped way I may think that means I'm trying to be "good" and "nice" by overlooking offense, but what I'm really doing is filling the pot up when the heat is on, and it's only a matter of time before I start to boil.

The thing about my family is that we are dealing with more than one major life problem at one time, and it's been difficult like this for years and years. When people are burned out, it's easier to lose control. It's easy when you live in close quarters to take out your frustration on someone when it's not really directed at them. It's easy to have one "last straw" that triggers the outpouring of pain and emotion. It's easy to literally throw in the towel and scream at the top of your lungs, "Enough is enough! I can't take this anymore!" Only, in the irrationality of anger, it can come out as "I can't take you anymore!" which is way worse.

My anger, frustration, and pain boiled over in anger and tears this weekend, and I felt totally ashamed afterward. I felt ashamed at my words, at overreacting, and especially before God because I had been studying his word earlier that day. I felt like a fraud and a failure. How can I claim to love God and pour out such bitterness? How can worship and resentful anger come from the same mouth? I was truly hanging my head that day as I walked out the door to my friend's wedding.

When I got there, I was just hoping to make it through the ceremony without having any health issues. I was still ruminating over how badly I had handled my emotions earlier, and I was especially convicted when the definition of love (1 Corinthians 13) was read aloud. My behavior? Not. So. Loving. Ugh.

Just as I was expecting a few short words before the vows and rings, the bride's uncle announced that he would be giving a sermon. I was waiting for the typical love, give-and-take, and how to have a happy life together deal, so I was completely surprised to hear him zero in directly on this verse:

"Do not be conformed to this world, but be transformed by the renewing of your minds, so that you may discern what is the will of God - what is good and acceptable and perfect." Romans 12: 2

Furthermore, he focused immediately on the word "perfect." He reviewed more of Romans 12 and the "laundry list" of traits that are set as the standard for perfection.

Ah great. Just what I needed to hear about, being perfect.

But then he said, "perfect does not mean being flawless."

My ears perked up. Oh?

He said that perfect is pursuing God's purpose relentlessly. He continued to speak about the importance of our purpose, the goal that God has for us, and that we cannot let our flaws hold us back from pursuing God. He said that we will fail in life. We will be flawed. That is certain. But he wrapped it up like this:

If there is a Phillips screw that needs to be screwed in, and you have a choice between a brand new flat head and an old, beat-up, mangled Phillips head - you're going to pick the flawed Philips tool because it's the one best suited to the job. That's what it was created to do, and it can do that job perfectly, even though it's got flaws.

When he said that, a wave of relief rushed over me. The bride, groom, and guests probably wondered why in the world they were hearing about flaws and purpose at a wedding, but I knew those words were, if nothing else, complete grace from God to me. It was as if he washed away my irrational words of anger and said to me: You're still able to complete the mission I have for you. Don't give up when you fail to meet my holy standards. You are covered by my Son.

If that wasn't enough, the next morning I turned on the TV to catch the tail end of one of my favorite pastors, Charles Stanley. After he finished his sermon, I was about to turn it off, but I decided I'd just leave it on for the "Ask Dr. Stanley" message at the end, where he answers an email question.

The question was from a woman who had experienced long-term tragedy in her life, and she couldn't properly handle her anger over the pain she was suffering and the people who had disappointed her along the way. It was as if I had written the question myself. Tears filled my eyes as Dr. Stanley compassionately comforted the woman and me by saying that God understood the emotions and the struggle.

I experienced that feeling of grace all over again.

But the really exciting part of his answer was about the purpose that God still intendeds for us to fulfill. He talked about God's goal for our lives and the need to press on to realize the specific purpose God has for us, even when we have to continually turn over our anger to him and even when we fail in how we handle our anger.

It was the SAME MESSAGE TWICE in under 24 hours! In both instances my heart felt washed in love, compassion, and forgiveness. I felt God speaking directly to me in my pain. I was also excited and encouraged by the hope set before me. This pain isn't all for nothing. There is a job for me to do here on earth, and it's a job I'm specifically suited for. My body, mind, and soul are being shaped to do this job that God has set me apart to do. It's a unique and awesome thing to be assigned good works by my Creator and to be fashioned by him in order to do them. It is so exciting that in spite of, and maybe even because of my flaws and failures, God can still use me.

It's my purpose today to pass along this encouragement to you. There is a purpose that God has uniquely created for YOU to accomplish. He can use a broken, beaten-up, humble heart that is committed to him. He wants us sinners to accomplish great things in His name. So if you feel humbled by a sin, weakness, or failure, remember this: It's not our flawlessness that counts, it's our faith and our willingness to press on in Christ.

"But where sin increased, grace increased all the more..."
Romans 5:20

"For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do."
Ephesians 2:10

When abnormal becomes the new normal

Recently, a good friend of mine got mono. Whenever I'd read his status updates on Twitter or Facebook, I'd find myself slightly surprised at how limitations and symptoms that were new and foreign to him were completely typical for me. Can't go to work? Can't do errands? One activity in a day is too much? Trouble concentrating? His health was radically altered to resemble mine for a few weeks. It reminded me just how much I've had to adapt my lifestyle to my limitations. Dealing daily with abnormal health has become normal for me.

It's not easy to understand chronic illness if you haven't lived it. I'm always happy to find some kind of analogy for my daily struggles with dysautonomia in order to improve understanding and awareness. This dysfunction of my autonomic nervous system affects almost every system of my body. Symptoms range widely in type and severity from day to day or even hour to hour. I can be doing ok one minute and flat on my back the next - quite literally. Describing these symptoms and feelings to another (healthy) person is just short of impossible, so sometimes I don't even try. However, it can be helpful to use an analogy every so often, just to keep those around me in tune with what I cope with on a regular basis.

Tonight, I briefly visited the online support forum for my condition. One member made me smile knowingly when she posted that adaptation and adjustment to her limitations had left her forgetting what it felt like to be "normal." She said that seeing people standing in 90-degree heat at a BBQ left her marveling: "What if they get overheated? How can they stand so long? How can they talk and not be short of breath?" I share this sense of wonder when I see average people completing normal, everyday tasks with ease. I sometimes question how a person can have enough energy to get through a full day of work without immediately crash landing on the couch. For me, watching the average person function is akin to seeing a superhero leap tall buildings in a single bound. If I think back, I know that at one time I was healthy enough to do it all, but it's as if I'm remembering a dream, not real life.

Standing is incredibly difficult for me because my blood pressure slowly drops the longer I'm upright. (To a lesser extent, this also happens with sitting upright.) Unless I shift my weight around, walk, or do something else to circulate my blood, my brain gradually runs out of oxygen the longer I remain standing still. I used to have no analogy for this kind of feeling, other than a fogginess in my mind and a feeling of urgency to move or lie down. I mean, even though my brain is slowly being deprived of oxygen, I still look entirely normal on the outside. What do people think when I start to have trouble following their conversation or finding words? Do I look thoughtless when I ask a question they just answered 5 minutes ago? Do I appear stupid when I have to think hard about simple responses? Does it seem odd that I can walk over to greet someone but shift away uneasily while we converse? All these questions go through my mind.

Standing for me is similar to lifting a heavy weight above your head. At first, you can hold the weight up without much of a problem. Sure, it's heavy, but it's possible. Then your arms begin to shake as your muscles fatigue. Soon, you can feel your body crying out to put this weight down. As you power through every message your body is sending you to STOP, you eventually find that you cannot will yourself to go on any longer. Your arms suddenly reach the breaking point and collapse under the weight that at first was manageable. It's the same way standing feels to a person with dysautonomia. The initial stance may be manageable, but the longer I stand, the more urgently my body signals me to sit, sit, sit! If I ignore these signals for too long, I can eventually collapse.

Another problem that I deal with regularly is severe fatigue (usually with muscle aches). Saying these words makes it sound like a nice nap or a day in bed will have me back up in no time. However, my invisible illness is not cured by sleep, and in fact, my fatigue is often at its worst during the hours after I wake up! I have had a hard time describing this type of exhaustion to the average person. There is just nothing like it when you are young and healthy with endless energy. The closest description that matches this feeling is when you have the flu. The flu makes every single muscle in your body ache, and moving feels like you are fighting through molasses. People who have had the flu or even mono can understand this feeling. When this crushing exhaustion is unrelenting for months and years, it is not possible to maintain a normal life. Imagine how having the flu disrupts normal life for a week or two. Now think about what it would be like to have the flu all the time. It's important to remind others that even though I look normal, I'm actually putting forth 3 times the typical amount of effort to get through a particular activity, and afterward, I "pay" for an event with worsening symptoms for days after it's over.

I've been thinking carefully about these analogies for some time, and I'm writing about them not to get sympathy, but to spread awareness of what it's physically like to live in a body limited by chronic illness. Each person with chronic illness probably has a particular symptom that disables them more than others, and some are more severely disabled than others, but the result is the same - trying to operate as normally as possible while feeling very far from normal.

Next time you meet someone who seems confused, distracted, or has trouble following your conversation... next time someone tells you they are just too exhausted to make it out... next time you meet someone with a chronic illness, remember that though they may appear normal, it's quite possible they are fighting through physical suffering greater than you could ever imagine.



"Be kinder than necessary because everyone you meet is fighting some kind of battle."