5 Things You Need to Know About Having an Invisible Illness

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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.

 

3 Comments on “5 Things You Need to Know About Having an Invisible Illness

  1. Wow! This should be plastered everywhere! I have Hashimoto’s (hypothyroid). Now that I’m in menopause, getting ‘re-regulated” has been difficult to say the least. Went to endocrinologist because my numbers have been high, low, high in the past 3 months. Gained weight, lost hair, hot flashes, etc. Endocrinologist had good news and bad. Good was: ALL my symptoms were directly attributed to my medication. I apparently am extremely sensitive to the “binders”, so she put me on a med with the least amount of binders. Bad was: my thyroid is essentially dead. Not producing ANY thyroid hormone of any kind. It affects EVERY system in my body. I now so understand “spoon theory”, but family clearly doesn’t.

  2. Thank you, Sarahbeth! Your articulate description of living with the ‘Unseen’ Illness has left me feeling not so alone. We tend to allow our minds to trick us into the silly notion that we are the Only person in the world who is struggling with unrelenting symptoms, eh?
    When I wake up each day (that could be a.m. or p.m.) the first thing I do is bring my hand up to my half-open eyes to look for knuckles. If I see them, it’s going to be a not-so-bad day. If not, the usual cascade begins, everything swells – joints, GI track, vocal cords, you name it. Prednisone is my only friend some days, or weeks at a time. My RA MD gave me a stern warning about taking it. It’s tough to listen to that while in the depths of a flaring illness. I agree about the fatigue being the most frustrating part. Plans are put off or wiped away altogether. That’s the really difficult part to come to terms with, but adjust, adjust, adjust expectations! Thank you again, Sarahbeth, and Hang Tight, okay?

  3. Thanks for posting this article is is very well written. As I have an invisible illness that is very difficult to treat and harder to understand as I have Mitochondrial Disease with multiple organs affected. But on the outside I appear to look normal to the world but most days life is challenging is some way for me. The biggest source of the frustration is when others think I am perfectly okay to do just about anything that is nothing of a task for them. But could wipe me out for days if I over do it!! My daughter actually asked me not long ago if I was running again. THAT HURT!!! as i would give anything to be able to run a mile. As I am very physically active person always have been my entire life until I became ill a few years ago. I don’t know if she was bring sarcastic or just in denial. But this is the kind of attitude I feel I get from people who don’t take the time to listen or notice that I have a feeding tube coming out of my arm 12 hours a day. REALLY!!! it makes me angry that people can be so rude and insensitive to such a devastating disease’s. Thank you again for your post my heart goes out to those who struggle with every day life due to masked disease’s that are not fake but really in every way. Take the time to ask someone who deals with it daily.

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