Things You Learn When You're Very Sick

There are several things that I have learned over the years during my battles for my life against the medical hell that decided to enter my life in the form of MS and recurrent infections. I try to keep them in mind as often as I can but sometimes even I forget to remember.

Normal Is A Relative Term: Embrace Your New Normal

What used to be “normal” is no longer normal in your world. Ask any healthy person and they’ll tell you that constantly seeing doctors, nurses, being in the hospital, having surgery and everything else that comes with illness IS NOT a normal way of life. They’re right. In the “normal” world it’s not the way life works but you no longer live in that “normal world.” Your “normal” has changed. It’s hard to embrace it but slowly you need to in order to survive it with your sanity intact (for the most part!)

Your Friends and Even Family Won’t Really Understand

They will try their best to understand what you’re going through. They will try to understand your ever-changing moods. They will do their best to help you in the only ways that they know how which is wonderful but they’ll never truly understand what it is to live with serious illness. Don’t expect them to.  On your better days remind them now and then that this is hell for you and let them know that though you know they are trying to understand you know they can’t and that it’s OK. All you need from them is their love and support. They don’t have to fully understand things because the truth will always be that they can’t.

Get The Emotions Out

Get a journal, a legal pad or a notebook of some sort and keep it in an easily accessible area for when the emotions really hit you hard because it’s a universal truth that when you’re really sick emotions are going to hit you and they are going to hit hard. Often times, they will strike when you least expect them to. That is when you grab some paper and a pen and you start writing. Don’t use a pencil. Don’t erase. Use a pen and make it permanent. Automatic writing is when you just start writing whatever comes to mind. It is sort of like having diarrhea of the mind and hand. Write it all out, whatever it is. You can share it with others. You can burn it. You can tear it up. You can crumple it up and throw it into the trash. You can save it for later. It doesn’t matter what you do with it so long as you do it. The negative emotions that come with sickness are a disease in and of themselves and you need to get them out. The better option between becoming a homicidal maniac and getting the emotions out on paper will always be the latter.

Be Real: Be What You Feel

You can live with and survive being seriously ill with a positive attitude and truthfully a positive attitude and a sense of humor go a very long way. However, you don’t need to plaster a fake smile on your face and act as though everything is OK. If you’re angry – be angry. If you’re sad – be sad. If you’re exhausted – be exhausted. If you need to have a good cry – have a good cry.

Have A Designated “Reminder Person”
What do I mean by this? Choose someone in your life as the person who will remind you that you’re still alive and you’re still you, all be it a different you, and who won’t allow you to wallow in negativity. Have someone you trust and who you know won’t think less of you if you explode on them when they remind you that you can’t stay in the dumps and that it’s time to crawl back out from the darkness. Even the most positive person will get stuck in the darkness at times and having someone who will fight you over staying there goes a very long way.

Less Is Often More

I’m not one for cliché’s but in this case it’s the truth. Often it is the smallest things that mean the most when you’re battling an illness. The laughter of a child, the laughter of your friends, the unconditional love of an animal, the bear hug of a close friend. The big things like parties in your honor or trips away are wonderful but the little things tend to mean so much more.

Lay Down Some Rules

Your family and friends simply want to be there for you and do anything at all that might help. What they don’t always realize is that sometimes the best help is no help at all. If you keep finding yourself overrun by family and friends and feel as though every time you turn around someone else is there lay down some basic rules for them. Be honest and let them know that you appreciate everything they’ve done and continue to do but that you will let them know when you need and want them to have a more constant presence but that for the most part you don’t want them there 24/7. It’s exhausting and it’s irritating but they don’t know that. Unfortunately having to explain a lot of things and sometimes explain them frequently comes with living with an illness.

Keep True Friends Near
Nothing shows you who in your life is a true friend like being seriously sick. Some people will step up and be there for you the entire way and others simply won’t be able to handle it. It’s not their fault. Not everyone is equipped for watching a friend struggle. It doesn’t mean they don’t care it just means that they aren’t the people you need surrounding you. True friends treat you the same as they treated you before you became sick with the added bonus of making sure in simple ways that you know from time to time that they are there for you to lean on.

Ask For Help When You Need It

If you’re an independent person this is one of the hardest things you have to learn. Asking for help with things whether they are big or small is always a humbling experience. You so badly want to remain independent and if you’re lucky you mostly are but situations WILL arise where you need help and you can’t always count on people noticing and stepping up without being asked.  It’s hard and sometimes it hurts but there’s no shame in admitting that you simply can’t do something on your own.

Platitudes Will Piss You Off

“You don’t know how strong you are until being strong is the only choice you have.”
“Everything happens for a reason.”

“What doesn’t kill you makes you stronger.”

“After the storm the sun will shine.”

“It could be worse.”

These are just a few of the platitudes you’ll hear repeatedly when you’re fighting a serious illness and believe me, once you’re sick and realize you’ve said some of these same things to others you’ll want to run up to them, hug them, and apologize for it. These are the things that people say when they don’t know what else to say and often you want to strangle them for it even though you realize they mean well. 

This list could go on and on but these are some of the ones that I feel are the most important lessons you'll learn along your journey that are important to remember. No two illnesses are the same and no two people deal with illness in the same way. We all, however, do learn lessons along the way and if what I've learned can help another then it is well worth sharing.