5 Things You Need to Know About Having an Invisible Illness
As one might expect, navigating life with an invisible illness is one challenge followed by another.
Beat one. Greet one. Every. Day.
Nothing prepares you for the constant fatigue, pain and mystery symptoms du jour – or the endless questions regarding medications and treatments (and let’s not even get started on insurance issues – holy mother of all things bass-ackwards!). You would think that it helps being a nurse – that I would understand more, making it easier for doctors to explain health matters to me. To an extent, that may be true. But at the end of the day, I am just as exhausted and frustrated as the next person who’s trying to keep the faith while waiting for a cure.
Despite the fact that answers hang in the balance, there are a few things I have realized along this journey. Walk in my shoes for a minute…
5 things You Need to Know About Having an Invisible illness
- It’s an oxymoron. Having a serious illness has given me greater clarity on the important things in life. At the same time, I am often very fuzzy on the simpler things. It’s called brain-fog and it’s a side effect of all the medications. Did I brush my teeth this morning? Is it Tuesday? What’s his name again? Ever feel this way? Check out this article: 10 tips for navigating your way through brain fog from butyoudontlooksick.com.
- Denial is a great coping mechanism. It can be useful when slowly adjusting to a new and stressful situation like a chronic illness. I admit to using it. Some of my friends and loved ones are equally good at using it, too. I call it the “if-you-can’t-see-it-it-must-not-exist” syndrome. While it’s perfectly understandable, people forget that I have an illness and expect or ask me to do things that I really can’t do. For example: I am happy to go to Target with you – and I can walk from the car into Target. But if you actually expect me to shop once we get inside, then I’m “gonna need a bigger boat” – and by boat, I mean wheelchair. Otherwise, you will be picking me up off the floor in no time. Here’s a great article by the Mayo Clinic Staff: Denial: When it helps, when it hurts.
- There are so many well-meaning people out there. Bless their hearts! FACTS: According to the National Institutes of Health, there are more than 6,800 rare diseases affecting approximately 25 million to 30 million Americans alone. And according to the NIH, there are more than 80 autoimmune disorders, which is the category of rare disease into which I fall. When well-meaning people tell me, “Oh my relative has one of those and this is what they did to get well – you should go gluten free, or stop eating corn products, or shave your head and stand on one foot (insert cure of the day here).” Well, I’m truly happy that it worked for their loved one. But chances are, as you can see from the stats, the rare disease their relative has is likely not what I have. In the off chance it is, patient care is still so individualized that what works for one may not work for another. It’s like a moving target – you don’t know where you are aiming for sometimes.
- Wow, has my definition of a good day changed! I’ve gone from my college days of “the Dave concert was so awesome last night” to “Woohoo! I stayed awake for 5 hours straight today!” On a really good day, I can take a quick walk or drive a short distance to meet a friend for coffee. Anything beyond that generally requires a wheelchair and a nap. But I’ll take it!
- I can connect with perfect strangers in online patient communities better than I do my own family sometimes because they understand things from my vantage point.