There are certain life lessons that you can only learn in the struggle.
Living with an autoimmune disease means living with many uncertainties. But there are many things you come to realize in time, that – had you known before – may have provided some small comfort along the way. And, let’s be honest, upon initial diagnosis when the whole world seems to have shifted and the life you had planned has been forever changed, we’ll take all the comfort we can get.
Autoimmune disease is full of contradictions – the very definition in its simplest form is your own body trying to protect itself by attacking itself. Seriously? This is, essentially, the equivalent of an older sibling pinning you down, moving your arm and shouting repeatedly, “stop hitting yourself.”
Having been through three autoimmune diseases (…and counting…) I consider myself somewhat of an expert. So here are some things I have learned that you may find useful.
- Wash your hands! Seriously, go wash your hands – right now. Channel your inner Howard Hughes… and… go wash your hands again. It’s, literally, NEVER a bad time to wash your hands. Your hands are the first line of defense against infection and you need all the help you can get!
- Speaking of help- don’t be afraid to ask for it. There’s only so much one person can be expected to handle on their own. Believe me, you will have plenty of opportunities to be strong on this journey, so take a much-needed break when it’s offered.
- Which leads me to: REST. Your body needs all the strength you can muster in order to fight this internal battle. So, rest when you need to rest so you can be strong when you need to be strong. One of my favorite sayings is “Autoimmune Disease: the only thing strong enough to kick my ass, is me!” When your body is trying to turn into your worst enemy you need to be your own superhero…But even superheroes take naps.
- There is a very fine line between a strong immune system needed to fight off infection and an over-stimulated system that turns on itself. Balance is everything and you must learn the art of tightrope walking to survive.
- Your body is a Temple – not a Frat House. Respect it and honor it for the wondrous and resourceful machine that it is. You will find that even when your body is physically at its weakest, your resilience can be at its strongest.
- Even so, be prepared for at least one significant disappointment, be it a bad test result, a setback in recovery or an inconsiderate doctor. This will not be a journey for the faint of heart and it will probably get harder before it gets better. It is almost certain that you will lose battles, but that does not mean you can’t win the war. It’s important to keep that perspective top of mind.
- On the opposite end of the spectrum, never underestimate the power of a good laugh. Allow yourself to appreciate the amusement in your situation. Having a sense of humor doesn’t mean you don’t take your illness or your health seriously but it can be a vital outlet for pent up stress and can often be your saving grace in a world turned upside down.
- Now, we must discuss what is perhaps the ugliest part of autoimmune disease: the dreaded steroid treatment, most likely Prednisone.
Spoiler alert: it’s certainly no walk in the park–unless that park is a bug-infested, criminal-laden, scary, dark park in hell…It might be a walk in THAT park. However, steroids are the primary treatment for an inflamed immune response and with good reason: they work like nothing else on the planet. Prednisone is a very unfortunate, yet necessary, evil. I’m not going to lie, you will probably hate it, you will despise how it effects your body. BUT, you will learn to appreciate, and maybe even respect it for the life-saving treatment it provides.
- And when you think you’ve had enough, find fortitude in your support system. Friends and family who will listen and encourage are invaluable, as are those who will tell you honestly when you’re being dramatic or need to stop wallowing. It’s important to have both. If you don’t have this type of support in your own circle, find a therapy group, Facebook support page — or contact me for heaven’s sake. There is no excuse not to arm yourself with this additional weapon. And I promise not fill your inbox with cat videos or FarmVille requests…unless you’re into that, in which case I probably still won’t.
- Finally, accept the circumstances of your illness for what they are: an inevitable luck of the draw that you couldn’t have prevented and can’t change. Instead, pour your energy into embracing the challenge, laughing in the face of adversity, and giving fate the “bird” because your spirit cannot and will not be broken.
And then, Fight. Like. Hell. 💜