One of the frequent struggles with invisible illness is that often times you don’t ‘look’ sick, you don’t appear to fit with in the parameters of what is generally considered an ill person. You won’t get the common courtesy’s , the much needed referrals or even a sympathetic ear. Instead you get a judgmental look and patronizing comment because people think they’re doctors, or at least know better than you do.While there are some out there who feign illness for attention, generally speaking people who are chronically ill do not wish to be. In fact they wouldn’t wish it on their worst enemy, I know I wouldn’t.
I want to make something perfectly clear : you do not need to explain your self to any one for validity of your condition, there is no reason to seek justification from an irrational outside party . A rational person can not claim to know how you are feeling or what you are going through, the only person who has the authority on that is you.
With that being said, it is critically important to read up on and familiarize your self with the condition you are struggling with. This is not being a hypocondriac or being obsessive, it’s called being responsible for your healthcare. With rare disorders you will be your biggest advocate, historian and with the right doctors you can formulate a proper care plan. You need to be armed with the knowledge and confidence in order to be the captain of your ship, otherwise you will end up floating aimlessly . I learned that the hard way. I tried to pretend for a little while that nothing was wrong and that I didn’t have Ehlers Danlos Syndrome and all it’s little @$$hole friends like POTS, Reynauds and other dysautonomic features. In turn I have been having multiple health struggles, a hospital admission and poor quality of life. I can’t enjoy my children and I can’t enjoy my marriage the way I want to and its my own fault.
Don’t be afraid of it and don’t feel compelled to explain it to someone who’s already made their mind up about you. If someone is genuinely interested and wants to listen with an open mind thats fantastic, but please don’t ever feel bad about living with a condition you did not ask for.
I have to be aware of my limitations and listen to my body, which usually means I’ll always need to find a place to sit for a minute until my blood pressure evens out , the circulation in my lower extremities return or the migraine passes. I won’t be going on long car rides across the country or hiking trails. I am able to do things in short bursts of awesomeness. If I respect what my body is telling me I won’t end up tanking later and end up depressed about what I can’t do, I’ll be able to enjoy what I can do. That’s the key to keeping sane with an invisible illness. Sometimes you feel like you’re losing it, because you don’t ‘look’ sick and a lot of times tests will come back inconclusive even though something is clearly wrong. You need to try and keep a positive attitude and know that you are doing the best that you can with the cards you were dealt. That’s all anyone can ask of you.
On a random note, I’d like to share this video of Christine Miserandino sharing her Spoon Theory at the 2010 Lupus Summit in NC. The basic idea behind it is with chronic illness you are allotted a certain number of ‘spoons’ (energy), and every day tasks that the average person takes for granted cost us chronically ill folks a ‘spoon’ and when we run out that is it, we don’t have the unending supply like everyone else does. It helps those who don’t deal with chronic health issues visualize what we have to deal with on a daily basis.
Have a chronic illness that people in your life don’t get? Constantly feel the need to ‘explain’ your self, or push your self beyond your limits because you don’t feel like you look ‘sick’? Comment below and don’t forget to ‘like’ my facebook page .