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It’s been a little over a year since I last posted here on the blog. Writing has taken a back seat with other pressing needs pushing it into a corner. Today I feel compelled to take the time, even if I have to work on this in stages to get it posted.
I want to post this especially on behalf of those who have “invisible illness” and don’t feel they have a voice.
The longer I live, the more hindsight I have with regard to connections genetically to these types of conditions. My mother had a thyroid condition and osteoarthritis. I believe she also had SPD and fibromyalgia, remembering discussions we’d had and symptoms/behavior she’d manifested. She just didn’t know what to call it. None of us did back then. My aunts (both of my mothers sisters) had debilitating rheumatoid arthritis and Parkinson’s disease.
My personal journey with invisible illness began around 1997. Some physical trauma kick-started a series of events ranging from migraines to severe cold intolerance to joint and muscle pain and fatigue. That’s one way that autoimmune conditions begin–physical or emotional trauma.
Fast forward twenty-some-odd years. Since that kick-start, I’ve seen GPs, chiropractors, physical therapists, and naturopaths. I’ve been told I have fibromyalgia, osteoarthritis, and chronic Epstein Barr. I’ve been given prescriptions–all of which have either been discarded or were ineffectual. Doctors wrote scripts for everything from big gun pain killers to heart medications to antidepressants. Modern medicine usually seeks to put a bandaid on things rather than get to the root of the problem.
I understand invisible illness. I understand “but you don’t look sick”.
Unfortunately, our kids have inherited some propensity toward autoimmune illness. In a very in-your-face way, we’ve seen it in our youngest being diagnosed with Type 1 Diabetes in 2016. I believe she also manifests Aspergers, which some research indicates to have a connection to immune system health. All three kids have manifested Sensory Processing Disorder (SPD) on various levels. Some believe this also has autoimmune connections. Here’s a helpful video:
It was suggested to me back around 1998 by an occupational therapist that SPD might be a part of my autoimmune smorgasbord. I dismissed it. I was already weary of being told I was “sickly”(someone used that term)…I didn’t need to embrace another label to add weight to that burden. The more I study, the more affirmation I see. SPD is not obvious to others, except that it may be observed that I cannot tolerate noise levels others find normal, what is hot to others is scorching to me–and what is “chilly” is intolerably cold, certain kinds of lighting (especially halogen and fluorescent) can drive me up a wall. The “itchy sweater you can’t wait to tear off” kind of feeling. And don’t get me started about labels, waistbands, and inseams. IYKYK (“if you know, you know”) This all has to do with the way my brain reads stimuli. People especially in Christian circles seem to balk at discussions about conditions affecting the brain, forgetting that the brain is an organ just as the heart, lungs or pancreas are. It is tragic, because the repercussions of avoiding this dialogue can have devastating results.
An important book dealing with mental illness from a Christian perspective
What does this look like in real life? Sometimes I spend all day in jammies. Sometimes I have to leave events that are far too loud, even if I wear earplugs (which are now always in my purse). Sometimes I know I can’t go at all. Sometimes the shades are pulled in the house. I rarely drive at night. Super long drives usually don’t have great results. There are coping mechanisms, but they don’t always work. And perhaps they’ll work one day and not the next. It’s all very fluid. You just do what you can do.
Needless to say, I’ve learned how to research. I’ve learned the wisdom of staying off forums for the most part where people have largely allowed themselves to be defined as victims by their conditions. It is depressing and not healthful to join in that kind of conversation that is just full of venting and listing symptoms and complaints. I prefer to make lemonade with my lemons. It may not seem so by outward observers, but there are courageous, unseen, uncelebrated decisions made every day by those with “invisible illness”. You decide what you are able to do, and what you cannot do. You triage the voices, and sometimes you mute them.
I’ve learned there are some people who simply will never understand. They define normal according to their own personal experience and if others don’t match that experience they are misjudged, ridiculed, or disregarded. Once someone ridiculed the reaction I was having due to a CEBV flare, saying they’d “had mono” and got over it. Not everyone reacts to viruses and pathogens in the same manner. Not everyone is resilient in the same way. That can be one of the hardest things to reconcile yourself to…being misunderstood by others. Eventually you’ll have to decide to take a step away mentally. Those who care will make the effort to understand instead of judge.
We are fearfully and wonderfully made. Each of us is a distinct entity, with our own set of traits, propensities, strengths, and vulnerabilities. We all have a different set of life experiences that we bring to the table. Personally, I think this is one of the reasons Jesus healed blind people in several different ways. Some were healed by His word alone. Some by a touch. Others were healed after clay was applied. Still others were healed partway and then fully. I believe He knew the kind of healing that would be the best fit for each person’s life experience, mental state, and physical circumstances. My two cents.
For lots of what is going on with my health, I just muddle through. I use NSAIDs, rice socks, heating pads. The fine print alone on most prescriptions makes me not want to dip a toe in. Some nutritional measures (supplements, teas, etc.) can help. Stretches and activating certain pressure points can provide relief. Using blue light blocking options on tech is useful. White noise at night is imperative as well as room darkening drapes. I try to get sleep (with melatonin or Benadryl helping often). Now I’m learning about anti-inflammatory diet. And the most important thing of all? Taking all of it to the One who made me and has a purpose in everything He does. He never wastes time.
The “invisible illness” club is growing in membership at an alarming rate. So I felt it was important enough to take the risk and put this “out there”. Sometimes it helps just to know someone else gets it.
And, be encouraged. The person who called me “sickly” back in the 90’s? Just a couple years later, she took the time to understand and ended up being a champion for me in a situation where I was too overwhelmed to advocate for myself. Take heart. Be as patient and understanding toward others as you wish them to be toward you. Take the great days when you have them. Celebrate but don’t overdo (I speak from experience…it’s a real temptation…balance is everything).
If you’ve stayed this long, I thank you. And anyone currently in your life or in your future who suffers from “invisible illness” I feel certain will be thankful as well. Let me know how I can pray for you. And come visit me at The Quiet Rest Podcast.
“Keep yourselves in the love of God, looking for the mercy of our Lord Jesus Christ unto eternal life.
There are various episodes of the podcast already available for your encouragement. Click on the links to listen (download the free Anchor app), or you can just visit the general Anchor home page for my podcast here: https://anchor.fm/diane-heeney
We’ve all got our fair share of stress. Some years ago I discovered an app that would provide the listener with a couple of minutes’ worth of nature sounds–ocean waves, meadow breezes with chirping birds, rain on a metal roof. I could feel the effect as my heart rate would calm. So I decided to do one better.
I’ve begun a segment of episodes at The Quiet Rest Podcast called “Two Minute Reset“. These segments will be, as the name suggests, only two minutes long and include some calming music running behind a themed grouping of scriptures on a particular theme. Just a brief, peace-bringing respite that refocuses the heart and mind. I hope you’ll join me there. At this writing, I plan to add a new episode each weekend. If you have a theme in mind that you’d like me to include, let me know in the comments or email me at quietrestpodcast@gmail.com.
Strength for Today 
