I discovered this morning that last week (Sept 11-18) was designated Invisible Illness Week. For people like me, who suffer from chronic illness but often hear the words “you look so normal.” Or something like them.
I have an “invisible illness.” It is actually quite visible to my doctors, in the blood tests and other labs I regularly have to get. It is usually visible to those who know me well. But to the random stranger in Walmart, the new family at church, or the friend of a friend I meet at a cookout, it remains invisible.
So, in honor of Invisible Illness Week, and to help you get to know me just a little bit better, and to spread awareness of all those living in my world (who have no visible signs of what their body fights every single day), here are some parts of my story:
- My invisible illness is called Granulomatosis with Polyangiitis, or more commonly, Wegener’s Granulomatosis. It is an auto-immune form of Vasculitis, meaning the immune system goes into overdrive and starts attacking the body from within, starting with the blood vessels. It involves severe inflammation, low red blood cell counts, kidney damage, respiratory damage, and mild to severe damage in almost any other organ of the body.
- I began having noticeable symptoms in August 2006, but was not actually diagnosed until May 2007.
- Ten months from manifestation to diagnosis is actually pretty fast; many people with Wegener’s (and other invisible illnesses) suffer for several years before being accurately diagnosed. This delay is because many symptoms are common enough to be written off as allergies, ear infections, rheumatoid arthritis, and generalized “bugs” going around.
- The two major aspects of my illness that remain invisible to the average acquaintance are a severely weakened immune system and a fairly constant state of low energy. I also have other problems like hearing loss (but not quite enough for hearing aids), varying potassium levels (which sometimes cause muscle twitches and heart palpitations), an eye that constantly waters, scar tissue on my vocal chords (I am physically unable to scream), and less-than-average lung capacity.
- Before my disease hit, I was an active college grad who regularly ran and hiked, socialized as much as possible, and never passed up an opportunity. Since the disease, I have to content myself with walking instead of running (because of weakened joints), a few hikes a year instead of multiple hikes a month, and a much lower activity level. I have to plan all my social outings (even just grabbing coffee) in advance, and there’s always the possibility that the day of the outing will come and I’ll have to cancel because I just don’t have the energy to even get ready, never mind get out of the house. In fact, I’m doing really great if I can make it out more than 2 or 3 days a week, even just for a quick trip to CVS.
- Before the disease, I never struggled with my weight. In fact, I was always on the lower side of things. After diagnosis, however, I shot up 50 pounds in a matter of a couple months. I am seriously struggling to get it off. I’ve lost about 20 pounds, but I’ve been working on it for over 2 years now. I’m limited by energy/stamina, climate issues (rain or cold bother me), and breathing problems.
- It’s not all depressing, though! I’ve learned how to say no to things (or people!). I’ve learned what’s truly important in life, and discovered who my true friends are. I’ve learned how to be a friend, by how people have been my friends through this whole thing. I’ve learned how to be creative in working for what I value: staying home on Saturdays so I can be in church on Sundays, forcing myself to rest so I can go out with friends later on, saving my energy during the day so I can enjoy spending time with my husband at night.
- I’ve picked up new hobbies. My mother-in-law introduced me to the idea of make greeting cards and scrapbooking, and I love doing it! I got back into writing, resuming my poetry writing after about six years’ hiatus, resuming blogging, and even writing a book that I hope will soon be in the process of being published. I’ve discovered a love for cooking since I’ve had time at home to experiment in the kitchen. I’ve devoured books on nutrition and fitness and health, that I might not otherwise have read.
- Even my ministry has changed directions. Before the disease, I had my hand in everything I could get it in. I jumped at every chance to be involved. Now, although I have to seriously limit my volunteering, I find my ministries are richer and fuller for the focus they receive. I’m building relationships with people I might never have met otherwise. I have a ministry through my writing, which might never have taken place. I’ve had to pare down my focus to only a couple of outlets, but I can now focus on just those things instead of being pulled 25 directions at once.
- I’ve been drawn closer to God. There were days before my diagnosis that I really thought I was going to die. And, without treatment, I would have died in just a matter of a few more weeks. But once they found the problem and started treating it, I had a renewed love of life and gratitude towards the Giver of life. Some of the Psalms became so real to me during that time. And I’ve had to draw from my Savior’s strength more than I would have done if I were still healthy.
- I’ve learned more about my God and His Word. I’ve had to study out His truths about sickness and healing, about what we should value, about how to deal with loss or unforeseen life changes.
So if you wonder why I no longer make it to church every time the doors are open, or why I don’t volunteer as much as the next person, if you think I’m being rude by not trying to get together with you for coffee or not calling you (phone calls are rough when you have hearing trouble!), if you wonder why I’m overweight or think I “have it easy” by getting to stay home so frequently – please remember, things aren’t always what they seem. Everyone’s story is different, but we all have “invisible” parts to our stories. We all have inner struggles that most people don’t see, whether spiritual or physical.
If you have questions about dealing with Wegener’s (or illness in general), I’d love to hear them!