When you first get sick, it’s like being completely engulfed in a cloud of fear, panic, sadness and depression and an endless stream of questions; with seemingly never any answers. As days turn into weeks and years, the initial shock and desperation gives way as you try to find acceptance and a new way of life, you never would have chosen. Illness becomes your only constant, while what you once were becomes a blurry, distant memory. What you choose to do next is what actually defines you. Will you live in sorrow, self pity and anger? Or will you choose to change, just as your body and mind has? It’s never an easy process and from person to person, it’s never the same. Here are some of the important life lessons that I’ve learned from living with chronic illness:
Trust yourself. Somehow, along the way, we lose trust in ourselves or at least I did. Do I really feel “that bad”. Can I really not go? Can I really not work? Maybe the pain isn’t that bad. Maybe I’m making a big deal over nothing…….it goes on and on if we let it. Chronic illness is alot of things, but “stupid in a pill” is not one of them. I didn’t just wake up one day and not know myself or my body. I didn’t suddenly become a hypochondriac or someone who would choose sleep over everything else. I wasn’t suddenly so desperate for attention that I began making up an illness. Through therapy, I learned to trust myself and my own judgement again. So from me to you, just stop it. Stop the constant questioning of yourself and second guessing. It just won’t help anything.
Doctors are human. On average, appointments are scheduled every 15 minutes. It’s impossible to effectively convey everything that goes on with our bodies or for them to have a complete grasp, in that short time frame. We often place Doctors on pedestals and expect them to have all (or any) of the answers. But Doctors are human. Granted, they are highly trained. But still human. They make mistakes, don’t necessarily know all the answers or have horrible bedside manners. We entrust the most important thing in the world to them, our life. So make your care collaborative. You wouldn’t let anyone else make all your life choices, right?
You cannot control illness. Thinking you can or trying to do so will only frustrate you and lead to horrendous feelings of guilt and inadequacy. Instead, even the planners in us need to let go and learn to accept that we can’t just will ourselves to keep plans or have a good day. Despite the deepest of wishes or best intentions, you just have zero control over it.
Advocate for yourself. I cannot stress the importance of this enough. Four years ago, my Husband got terribly sick. He had a spot on his face where the flesh began to turn black and spread. He lost 25 pounds and was so tired he slept all the time. He had headaches, body aches and a jaw so sore, it was becoming difficult to eat. Five Doctor visits, two ER visits and a trip to the Dermatologist were all painfully inconclusive. So in his final appointment with his Primary Care doc, I demanded she run a Lyme test. She furiously fought with me and told me his symptoms didn’t align well with Lyme. In that moment, I became a very scary woman. I flat out told her I didn’t care what he aligned with or what her opinion was any longer. I had great insurance and I *unequivocally demanded* she test him for Lyme. Sure enough, I was right and Bri’s Lyme count was 400 TIMES the norm. You have a right to good care and you should not expect anything less. I could go on and write an entire post of additional situations in which I had to fight for a second opinion, a test or a Specialist, but we’ll leave that to another post.
Review your medical records. You have a legal right to receive a copy of each office visit’s consult notes. Request it. In the Doctor’s Consult Notes (also called encounters or progress notes) not only do they list a diagnosis and treatment plan, but they also give their subjective opinion on the office visit. I recently had a Cardiologist, I really love, include his opinion that my fainting spells were caused by my emotions. Now, I agree that many of my conditions are affected by my emotions, but this particular issue isn’t one of them. At two subsequent appointments, I had other Doctors quote what the Cardiologist wrote. So now, his incorrect assumption was affecting the care I received elsewhere. When I pointed it out and asked the Cardiologist to change it, he reread what he wrote and said he had no idea why he wrote that and changed it. These notes follow you everywhere, so make sure what they contain is correct. It can also affect your filing for Disability, if you choose to do so.
Be unapologetic for doing what you need to do. This is a tough one and often one that is difficult for healthy people to understand. And they can’t possibly be expected to understand. So instead of trying to achieve the impossible, just focus on taking care of yourself. Make the choices that are best for you, in the moment. You’re the one who will have to live with the consequences of those choices.
Let go of people. People who are healthy cannot possibly understand what it is like to live your life, except maybe those that directly live with you. After years of having people in my life that either didn’t believe I’m sick, couldn’t accept my unpredictability or couldn’t forgive me for missing some event, I gave up. Anyone who doesn’t love me, respect me or respect what I live with, is now gone. I have to say, my life is much easier as a result. Good people, worthy of having in your life, will understand. Otherwise, they aren’t worthy of you!
You are still you. I still love clothes, shoes, bags and jewelry. I recently had a friend, I hadn’t seen in ten years, come to visit and we had THE best time!! For three hours, we barely spent any time at all talking about my getting sick. Instead, we caught up, laughed and joked. When I got home from that lunch, I came straight into the house and became violently ill. I was on the couch for the rest of the day. BUT, that lunch date served as a great reminder that being sick is not my identity. It may consume alot of my life, but I won’t allow it to consume me.
There is no shame in not working. I once had a Doctor ask me what I did for work. On the verge of tears, I said I was on Disability. Then came that look. It’s an incredulous look, one fraught with disapproval, judgment and almost disgust. Why thank you! I really needed that. I never went back to that Doctor again, but she also forced me to look at my situation more objectively. I miss work. I miss the financial stability. I miss my colleagues, status and success. I vowed then, to not allow anyone else to reduce me to such a shameful place. It’s easy to judge others when you have no idea what they live with. Her judgement is her ignorance-not mine. I won’t take that judgement on. As someone who had worked since she was 14 1/2, I was never one to not work-certainly never by choice. So now, I follow my Therapist’s advice. Once I can make 30 straight days of feeling good, I can reassess my work situation. Having that in the back of my mind, serving as a constant reminder, helps quell the shame and sadness of not being able to work. Because I have yet to ever hit even 14 days. Don’t take on other peoples’ judgments or assumptions.
Seek therapy. This one was important. If for no other reason than I finally felt justified to feel how I felt. I learned that everything I felt was normal and justifiable. I learned some great new ways to cope and got “permission” to not be able to cope.
Research. And I don’t mean read the pamphlet the Doctor gave you. Your body is your own. Each of us has our own, very individualized responses to everything: medication, illness, mental health. Check out Blogs, Forums, the Mayo Clinic. Learn about other people’s experiences. Keep researching and keep learning. Your body (and mind) are your responsibility. No one else will put that first.
Find a community. This is one of the last things I have done is join Facebook, Pinterest, Twitter and Instagram. I can’t say there was specifically any reason, but I had always been hesitant. Now approximately six months after finally doing so, I can say that finding other people who suffer with chronic illness, like me, has brought me great comfort and some semblance of companionship, when I’m otherwise unable to meet or interact with people. Especially people who “get” what it’s like to live the way we do.
Life is a marathon, not a race. When we have one bad day, it doesn’t mean that tomorrow or next week won’t be better. Society tells us “not to put off til tomorrow, what you can do today”, except, that’s exactly the mindset we need to adopt. I live for my dog walks. Every time it’s finally sunny, I’m excited to get in my walk. Except, my body doesn’t work that way. So, you know what? There will be more sunny days. Stop looking at today being the end all. I still have plenty of dog walks in my future. Apply that mindset to anything; errands, chores or a bucket list. Instead, live by the creed of “nope, not today, but maybe tomorrow”.
I am SO strong. I may not feel it and I get terribly frustrated by that perceived lack of strength. But seriously. Look at all that has happened and all that I (and you) have endured. Write it down, if you must. But to get up every morning and to still try to live every day, demonstrates the incredible tenacity of the human soul. Getting and staying sick doesn’t make you weak. Not giving up, even when you want to, is the true measure of your strength. And mine.
Stop obsessing over the future. I think I was born planning. I’ve always planned everything out. But when you’re sick, that ability is taken out of your hands. I live in terror of anything ever happening to my Husband-what would I do? I fear growing older and losing even more independence. But I have absolutely zero control over any of that, no matter how upset that makes me or how terrified I am. So I have just stopped thinking about it. I push the thoughts and fears of the future from my head and I focus on the here and now.
There is still tomorrow. Okay, you totally can’t handle today. I get it. So give up-I totally give you permission to throw in the towel and totally quit. Today. Chock today up to a bad day and allow yourself to have it. Tomorrow is a new day.
Find things to be grateful for. I think I write this in practically every post I write. There’s good reason. Dwelling on all you’ve lost and who you were, will only perpetuate the grief, anger and sadness. You can’t go back. So it’s important to find things to be grateful for. While you may need to search your soul for gratitude, it’s there. There’s always something to be grateful for. When you find it, grab it and hold on tight. Living with gratitude will get you through some of your darkest times and give you the strength to hold on until brighter ones.
I am a firm believer that an intelligent person will continue to learn their whole life through. How I live my life and live with my illnesses will continue to change and adapt. How I see myself now, will certainly not be how I see myself in ten years. Likewise, 8 years ago, I could not have imagined all that becoming chronically ill would teach me.
Keep living, keep learning. You’re worth it.