I recently went to see a production of Into the Woods. A favorite song of mine from this musical states “You are not alone. No one is alone”. For some reason this has stuck with me the last few days since. I sit back and think about how these words roll off the tongue so well when it is you saying it to someone else. Looking in the mirror and telling yourself you’re not alone is a whole other picture. In the world of chronic illness it is so easy to be sucked into this world of secluded misery. You begin to realize the amount of people that drop out of your life. You feel like even those that have stuck by your side do not understand what you’re going through… And to a certain extent they obviously don’t. You blame yourself on occasion. Telling yourself maybe you could be stronger, maybe the pain yesterday wasn’t as bad as you were making it out to be, maybe I could fight a little harder, maybe it’s all in my head and I can make myself better. It’s easy to be sucked into the oblivion of trying to rationalize your situation. It often feels like no one understands this cycle we get caught in. A cycle that solves nothing and gets us no where. So what do we do? We fight. Right? That’s what everyone else does. They fight. And here we are again at the other end of the circle… where all is easier said than done.
So now what? What is the politically correct manner we are to uphold ourselves in society in order to ensure we do not cause any discomfort or alarm to those around us (God Forbid!). The answer. I don’t know and honestly, who does? What’s important to know is that you truly are not alone. Even in the times you feel you are and will always be and there’s no hope for you? Yes, even in those times. Guess what? Everyone and I mean everyone goes through these same emotional ramblings with chronic illness and I think with any life problems period. But we’re here to focus on chronic illness so lets do that. Let’s focus on the process we go through and how or what we can do to see ourselves through it.
First the issue at hand. Your disease. Chronic illness, needs to be better defined to the global community. This is not some sickness that you get, take a pill and you are fine for the rest of your life. Most of us that have received these diagnosis’ could dream of a day where a magic pill will be the cure all of our disease. This is why we have every ribbon color in the book for every disease organization you can think of, because we all have the same goal of hope (albeit it seems delusional for many of us to think one day there will be a cure, but we hope because it keeps us going. Without hope we dig a deeper hole). This disease you are diagnosed with, in the beginning, we really don’t quite comprehend the meaning of it. We are naive. We do our research but don’t truly understand the extent of damage being done to our bodies and the emotional toll it will take on us and our families. It doesn’t take too long to come to this realization. Quickly you may go into denial. “Maybe I am one of the better cases, I probably won’t have it that bad. I will be able to deal with it better than others because I am strong.” What a joke! Truth be told, We are ALL strong, and truth be told the chances of best possible scenario are unlikely. After a while you give in and accept that this is what you are going to have to live with for the rest of your life. We begin to equip ourselves with as much knowledge about our disease that we can possibly absorb. We find support groups, internet articles, specialists of all kinds and more. This is when we arm ourselves and as we become more educated we fight. We fight the disease to the best of our abilities with medication, we fight with our emotional strength, we fight by finding support and we fight by questioning doctors and the medical system. We start to stand up for ourselves. We strengthen ourselves and prepare ourselves to fight for the rest of our lives.
So lets pause and think about this for a second. Obviously I am making a point here about the process many of us may go through. It’s like one of those steps of grief that we naturally go through as human beings. Yes, maybe I am missing a step or two but in general this is what we feel. THIS IS what we feel. Yes, I put it twice, because it’s not a one time thing and I think this is something that becomes difficult for the “healthy” to comprehend. We go through this, constantly. Because as is the case for many, our disease progresses. It attacks a new part of our bodies, it takes away a new livelihood from us, it removes a basic daily functionality from our routine and we find ourselves back at square 1. We can arm ourselves all we want, but our battle is never ending and this battle gets to be more and more exhausting. Pair that with the battles we face with doctors, medications, medical bills and insurance companies and it’s amazing there is anything left. Layer after layer we are stripped down to our very core on a regular basis and have to do all we can to pull ourselves back together piece by piece until we can feel some what whole again, and even then, it is a very cracked and broken whole. From here we are changed. I used to be a person that swore people never changed, and then this happened. The person I was before all of this and the person I am now are completely un-recognizable, and when I say change I mean the very core of my being, beliefs, views on life, people and so much more. You cannot go in to a chronic illness and come out of the process the same person. Remember this, recognize this.
Then there are the people. People I have stressed before in previous posts are what make you survive, but there is a catch. You have to find the right people first. The ones that are strong enough to handle experiencing this process with you over and over for the rest of your lives. These people are hard to come by. Some of us are lucky, some of us have these people in our families, and are raised on the solidarity that family sticks together no matter what. Can you imagine not having this? Honestly, I cannot. I am one of the lucky ones. Those that aren’t, have to create their own family in the ones that care for them. This is what happens. In many cases not even your blood relatives be your “family”, but those closest to you become your family. The ones that you call when you need to have someone take care of you, make a hospital run with you, stay overnight with you, do whatever they can for you. They are your family.
Of course to back track here, finding these people means discovering the people in your life that are not cut out for the job. A chronic illness will easily put a gap or an end to your relationships. The key here is that it is a relationship, it is a two way street. It’s a lot for a friend to handle, and it’s hard for the chronically ill to understand this at times. We are so manipulated into thinking, when we grow up, that all of our friends should be able to handle everything, do and/or sacrifice anything, but the truth is, everyone is different. Everyone has different levels of comfort and everyone will be there for you in their own way. I have friends that are some of my best that have never come to visit me in the hospital. For a while I held that against them. I couldn’t believe how rude it was. I mean who wouldn’t come visit their sick friend who just had surgery in the hospital?? Then when I spoke to them about it, rather than cutting them out immediately (as I realized I had done previously), I discovered it had nothing to do with me. They hated hospitals with a passion and some to an extent that there was a fear. I could totally understand this. Having been in them so often…I want to be in them as little as possible. Since then, these friends will now make a point to visit me when I am home after, bring me a meal, check in with me while I am there. I guess my point here is don’t be quick to pull the trigger on those you think are not there for you. It may not be this situation specifically, but bare in mind other circumstances. I feel as though allot of us who get these conditions are quick to just jump to the worst conclusions because that’s what life has given us and that’s what we often get. We need to offer those that care for us the same courtesy we would want to be given. That’s not to say the outcome will be positive… it may not be, which it most definitely has been in many cases in my experience and sometimes it feels like in most, but keep in mind… There is more than YOU to consider in your disease. I know, it sounds crazy, but there is some serious truth in those words. Do this and you will find yourself with more family than you thought you had.
The Blame Game:
It is so hard to not have anyone to blame for your disease. Trust me, I have tried to blame everything for it, and it never makes me feel better. It certainly accomplishes nothing! But I still find myself wanting to scream “Damn you genetics! or Processed Foods! or Doctors that took too long to diagnose me cause you’re all idiots!” You know, the usual.. We are always looking for an answer, and to find that answer we need something to blame. It’s why we are so drawn to millions of posts and medical articles that speculate what causes what, for example: “Did you hear that now eating too much lettuce causes cancer?!” DAMN you lettuce!! being all filled with water and nutrients! Haha. So let’s be realistic. If you have a chronic illness, and chances are it is not curable (YET), what are you supposed to do while you wait for the rest of your life for a cure?
First, you have to accept that other than genetics (even if you’re like me and no one else in your family is formally diagnosed, although some are in denial – am I right?) you may never know why you got the shit end of the deal. But you got it. Acceptance is a word I hate saying. I am a control freak and not one keen on accepting anything I cannot control Acceptance of my disease and all it has done, took me years and years and years and years. And well… to be honest there are days I still don’t want to accept that I have it. Here’s what happens on those days: “I feel pretty good today! I’m going to partake in activities I haven’t done in years because I am in denial!” Next day “WHAT WAS I THINKING I AM DYING!”. We have all been there and done that. So i guess the first step to accepting your disease is knowing your limits. What you can and can’t do. What will put you over the edge, or in a hospital bed. Address your limits and accept the fact that you will have them, forever.
Forever… another bitter word for anyone with a chronic illness. We have to face the fact that we are going to have this disease forever. There will always be hope for that cure that we all want, but we cannot live like there will be one tomorrow. Mentally and emotionally we need to be in a place where we realize we will live with this forever. What do you need to do to mentally process this, to physically prepare for this? Each one of our illnesses are different so make yourself prepared for the “forever”. This will automatically feed into your “Future”.
If this is going to be a forever disease, you need to know what to be prepared for in the future. What will your lifespan be? What are your chances of disability? Do you have children and a family? Should you have children? How do you educate and prepare them for what they will experience as your disease progresses? Future is the toughest focus for all of us. Mostly because we are always trying to live day to day, or I should say survive day to day… It’s important not to put this off because the progression of your disease will become a reality one day. I cannot stress the importance of planning for the future, of being prepared for it the best you can, the best any of us can plan for it at least. When the future becomes the present, you will be eternally grateful you were as prepared as possible to face what you will be facing at that time. If you’re not prepared there will be only one person to blame then, and it will be yourself. Harsh and lonely truth, I know. I see myself typing these words and the truth is staring me in the face, Am I even prepared? I don’t think I am. Not enough at least.
The fun part. The part where we feel prepared. We know what we have, who we have by our side and we have prepared ourselves for the worst of it. Here we are ready to go into battle, ready to face any doctor, any symptom, any medication thrown our way trying to knock us down. We have our support groups of those like us, our network of those who take care of us, and we have the drive within us to fight. We are on a roll and nothing can stop us. Until it does. It can be anything. A new symptom that turns into a new disease we weren’t originally aware could be caused by our disease or our medication. A new doctor, that tells us the other is wrong with diagnosis or wrong with treatment and we need to start from the beginning. It could be anything. We can prepare to fight, and we will all fight, but are we prepared to fall? I cannot count the number of times I have fought and not been prepared for the fall. How many times I have been caught off guard with something new. You all have read my background, you understand. What can we do? What are our options? Do we constantly stay on guard waiting for the next tragedy? Do we just let it happen? How can I even answer this? The only thing I can come up with here is just to know that life happens. Countering what was said in the previous section, we prepare for what we can, but sometimes life just happens, and we pick ourselves back up and we keep going. Am I tired of having to pick myself back up, yes! Absolutely. I even want to give up sometimes, but we take ourselves back to start of the process and we keep going.
So let’s prepare for the fall…. We note it may/will happen, we make ourselves emotionally prepared to face what we can, and we ensure we have our support system in place to take us the rest of the way. I have a phrase at the end of my email address that I came across a year or so ago that I hold onto and it gets me through the every day, the future and the fight. “The happiest people don’t have the best of everything, they make the best of everything”. That’s what we do. We make the best of everything. I am often praised by those who know me well for always having a smile on my face “even with all you have been through” (while I sigh and feel some pity towards myself) and I always come back to this phrase. If you cannot make the best of what you have, then your life will be an empty one. There wont be any fight, there wont be any love, there wont be anything. Our lives may be full of pain, full of daily struggles, full of exhaustion, full of moments where we are ready to give up, but we control making our lives FULL. Making the best of my situation is how I avoid the loneliness, face my truths, and keep my cup always at half full.
To wrap here and re cap. You are not along. You will have moments of loneliness but this can be overcome. Know your disease, know your limits, accept what you have and what you can and cannot do. Maintain the right relationships, and remember there is a give and take here. Arm yourself, prepare your self, fight the best way you know how. Stay positive! This is how we survive.
-Just a Regular Sick Girl