So today I feel heavy and hurt and exhausted. Living such a restricted day to day life is certainly not easy. I should be rejoicing in the fun things I was able to do this week, (the day before yesterday I stayed up and “helped” make yummy cupcakes with Sean and my sweet sister and then yesterday I got to go to a Harry Potter movie night youth event with Sean’s teens; THAT was a blessing and so much fun! I am feeling that joy but I’m also feeling overwhelmed with the heaviness of chronic pain and disease. I think I ought to explain that when you’re severely chronically ill not only is it hard to function in general, but it is ESPECIALLY hard to function when you find yourself walking around with excess weight on your shoulders. Actually, it’s carried a little lower than the shoulders, it’s an excess weight carried in the heart. Yes, I’m talking about the emotional burden and spiritual battle, the negative labels others give me and the labels I give myself that I must fight to keep from becoming part of my identity.
Incapable, flaky, weak, whiny, dramatic, burden, money pit, source of stress, waste of a human, couch potato, lazy, not trying hard enough, alone, hopeless, purposeless, NOT GOOD ENOUGH. These are the labels I woke up battling today.
I want you to take the time to do a little activity with me. If you have a pen and paper nearby, grab it. If not, go ahead and picture doing this in your mind. On that piece of paper I want you to write down the negative labels and lies others have intentionally or unintentionally placed on your shoulders and those that you’ve placed on yourself. Think about what those labels represent and allow yourself to feel the extra pressure and weight that those labels add to your life. Now, I want you to take that piece of paper and either tear each label off one by one or scratch them out with a pen or marker as you address each label with TRUTH. I want to flesh out my own process of that for you as I fight through those feelings today. For some reason I feel like it might help someone else feeling the same things or maybe give some of you more insight into what goes on in my life and heart.
First of all, I feel completely incapable because of my illness, and that label is often true. I’m incapable of showering by myself, driving, cooking, cleaning, walking long distances, working, going out more than a few times a week, some days even reading, writing, thinking, LIVING. I’m incapable of being as involved with the Crosstown church youth as I would love to be or even with the congregation as a whole. I feel incapable of being a support to my husband, friends and family like I really desire to be and I have so many goals, dreams and plans for my life that I feel incapable of fulfilling. The TRUTH is that I’m extremely capable. I’m capable of loving and encouraging, laughing through pain and persevering when so many would give up. I’m capable of learning, growing and trying. I’m capable of fighting and I KNOW I’m capable of beating this illness. I don’t know what shape or form that will take physically, but I do know that I am fully and completely capable of overcoming it. In fact, I’m doing it right now, right this very second. I’m beating the sickness that has taken over my body by speaking truth into my life and persevering!
Okay, honest confession: I struggle with forming and maintaining friendships that I want and need. Sometimes it’s because I have been through trauma in my past and sometimes it’s because all of my energy goes toward fighting disease, both leave me very vulnerable and with a want to protect myself. I can’t predict what my body will be capable of far enough in advance to even make plans. I don’t have the energy to go out socially and even spending time with people at home is rare and exhausting. Chronic illness is isolating, the more severe the illness the more severe the isolation. Since I’ve been sick I’ve lost many friends. They either couldn’t understand what I’m dealing with, couldn’t support me in my battle, or genuinely care but we grew apart because they carried on living their busy lives, and sadly, I couldn’t be part of that. I’ve felt disappointed in some of those friendships, but I’ve mainly recognized that my situation can make or break friendships. It’s hard and it’s heavy and rough to watch me hurt and to try to hold on and encourage and uplift me when I’m sure it must feel like I’m always slipping away. At times I admit that I do feel forgotten. I also blame myself for my inability to make plans, the necessity of constantly having to cancel plans and my instinct to hold people at arms’ length. I feel flaky and I feel alone. The TRUTH is that I don’t blame the friends who have come and gone anymore because it’s part of life and especially part of life with a severe chronic illness. I don’t blame those who couldn’t understand, and while I accept responsibility that I also couldn’t maintain those relationships, I’m also letting go of the guilt and the label of “flaky” because it’s NOT my fault and it’s not in my control. I’m also speaking truth into declaring that I’m NEVER alone. I have SO MUCH SUPPORT and love coming my way daily. I receive sweet cards in the mail, messages or posts on social media, calls and texts, amazingly thoughtful gifts and even when I spend many days by myself I’m still absolutely surrounded by people who love and care about me. I’ve said that during this journey I have been so disappointed that there hasn’t been support and understanding from the people I expected, yet at the same time I’ve been BLOWN AWAY by the love and support from new friends, old friends and family that I never expected at all. Life is beautiful in that way and so is God. I have so much to be thankful for and so many people in my life to love!
Another confession: I suffer inexplicably on a daily basis from a LONG list of symptoms and conditions most of which I don’t share or discuss because when I talk about what I face and the pain and symptoms I deal with in detail, I feel like I’m whining. I feel dramatic, negative and like I’m asking for attention when I’m absolutely not. Some of those labels I give to myself, but others are there because friends, family, acquaintances, doctors or strangers have purposefully or accidentally placed them in my mind and heart. Logically, because the labels of “weak” and “whiny” resonate with the way I view myself, I let them stick; HOWEVER, the TRUTH is that none of this is my fault. I struggle, y’all, and it isn’t pretty. It’s intense and extensive. It’s not negative or dramatic, it’s just my reality. Some people will want to hear it and get deep into the dark and ugly and suffer alongside me and others will want to dismiss it, and that’s OKAY! When I am open and honest about my struggles and my pain the truth is that I’m not whining; I’m not looking for attention; I’m not being dramatic; I’m being REAL and I’m being OPEN. That’s not only a positive thing but also a very HEALTHY one. I should do it more often, more honestly and more extensively.
Okay this is another really hard one: If I’m honest with you, I constantly feel like I’m a burden. I’m a burden to my husband, family and friends. I’m a physical burden because I can’t care for myself and need help with everything. My sweet husband never gets to sleep, my mom is stressed to the max, my dad is watching me fall apart and my poor 17 year old sister has had to babysit me at nearly 25 years old; that wasn’t supposed to happen! It’s not the plan my friends and family had for me or for their own lives and it’s not the plan I had for myself. I’m an emotional mess at times. I’m depressed and distraught and I get angry and snap in frustration much more often than I ever did before. It’s heartbreaking and difficult for them to see me struggling so hard. I’m also a financial burden because insurance won’t cover the majority of my treatments and we still have to meet the deductible and pay our portion on those that it will cover. Sean and I barely squeak by on one income so my parents have been WONDERFUL in helping pay for my health care. We’ve also had countless friends and family help support us financially. They do it because they love us and the help is not grudgingly given, yet it’s a stress and a burden to them and also to me. I feel BAD that I’m a source of stress. I feel BAD that I’m like a black hole where large sums of money vanish in an instant. The TRUTH though is that I am NOT the burden. I am not the stress and I’m not to blame. My DISEASE is the culprit. The truth is that it’s a bigger burden and stress for ME than it is for anyone else in my life. It’s absolutely NOT my fault that I’m sick or that I’m suffering nor is it my fault that it’s costly and time-consuming and HARD. It’s hard on all of us, but I’m NOT responsible. I refuse to carry that weight any longer.
I think it’s obvious that I have to fight hardest against the belief that this disease is my fault when it 100% is not. I have felt the judgement at times from my family, friends, doctors, even from random strangers that I’m lazy, complacent, not trying hard enough or not wanting badly enough to be well. Some days I believe them, and I carry that weight around on my shoulders on top of everything else I deal with emotionally, spiritually and especially physically. If only I could tough it out and tolerate the treatments that have worked for others but my body has rejected. The TRUTH is that I fight with EVERYTHING I have and I constantly hustle to not only get through each day and proactively seek a cure and better health, but also to find a way to ENJOY each day, to rejoice through the suffering and to celebrate life. I FIGHT through painful treatments as best I can and know I have to listen to my body on its limits and treatments it rejects. I fight for hope and I fight for my future. I fight for my friends and family. I fight for my awesome husband. I fight for my faith and most importantly, I fight for MYSELF!! I don’t give up even when I’m seriously tempted because I know that no matter what Satan screams all around me, I can still hear the soft gentle whisper affirming that I have great PURPOSE. I have WORTH. My life has MEANING and I am LOVED! The truth is that Satan wants me to feel hopeless and purposeless and to GIVE UP; that’s his ultimate goal in my life. So even when I am completely sidelined from life I will keep declaring truth and claim that I am LIVING. Even if all I do today is sit in bed and watch Netflix and cry because of pain, I’m LIVING. I’m accomplishing! I get to be undeniably proud of myself for simply making it through today and that is meaningful. It’s a huge triumph and a celebration that I conquered another day of excruciating chronic pain and disease! BOOM! TRUTH BOMB!!
Now that I’ve tapped into the power of truth (and hopefully you’ve done the same with your own labels and lies), I ask God to forgive me for forgetting my worth and for believing the nasty lies and the labels. I thank Him for giving me a wonderful life. I thank Him for sending Jesus to show me what it mean to conquer and overcome. I thank Jesus for lifting the burden of lies and carrying them for me, for not being the type of savior who instantly removes the struggles but for being the savior who suffers alongside me, who molds me and changes me for the better. I have a savior who walks right beside me even on the darkest days. I don’t need the blame, shame and negativity in my life and I don’t want it there! I will continue to thrive on the strength, positivity, joy and hope I’ve found within myself because of Jesus. I hope all of you who read this post will take that strength with you today as well as you overcome whatever physical, emotional and spiritual obstacles you’re facing in your own life. Blessings! I’m praying for every single one of you.
6 For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ. 7 But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. (2 Corinthians 4:6-9 NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11 NIV)
9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12:9-10 NIV)
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. (Romans 8:37-39 NIV)
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. (2 Corinthians 4:16 NIV)