As I began to join support groups after my diagnosis, the one thing I heard most from those who had gone before me was, “Do not let your disease define you! Do not become your disease!” They seemed like very wise words at the time but the further along I got in my treatment; I just didn’t see how that could be possible. Trust me, I tried extremely hard to ignore my disease and pretend that it was just some miniscule part of my life I could put neatly into a little box and push to the background until I absolutely had to attend to it. Sure I’d need to address it every now and then; but AFTER I let Jenny shine through first. I tried to keep the burdensome symptoms and treatments in the tiniest possible compartment of my life but eventually the monster grew until I had to admit there was really no way to keep it separated from the rest of me. The sicker I got, the longer I treated, the more I realized that my disease had managed to entwine itself into the very fabric of my life. Much like how the wild morning glories seductively wrap themselves around the wires of the chain link fence, twisting and turning around the stems and heads of flowers I meticulously planted in the area; slowly overtaking the entire garden as it sneakily strangles everything in the garden. Likewise, my disease was like creeping ivy slowly wrapping itself around every fiber of my existence. How can you separate yourself from something that infiltrates into even the smallest areas of your life. Your days are no longer your own. You can no longer be carefree, impulsive, spontaneous. Everything has to be carefully and meticulously planned. Suddenly, and without your consent, your days now revolve around your disease and your treatments.
I remember when I’d awake from a full night’s sleep, energized, jumping out of bed ready to take on anything the new day had in store! Now, when I manage to groggily rouse myself from yet another night where sleep was stolen by insomnia like a thief in the night, the first think I do is take an inventory of my body. I start at my toes and work my way up. Can I move my feet, are my toes cramping? How swollen are my knees and hips? Are my legs numb and tingling today? How bad is the joint pain? Is the muscle weakness bad enough to keep me in bed? Am I swollen? Can I move my wrists and fingers? Can I swallow? Is my Bell’s Palsy flaring today? Can I speak coherently? How bad is the migraine? Am I having those visual disturbances that make it feel like the room is tipping over?
I sit up slowly on the edge of my bed and wait a few moments while I try to shake myself from the foggy haze. I know that if I stand up too quickly my blood pressure will plummet and I’ll suddenly feel like passing out. Unable to fully feel my feet because of the neuropathy, my gate is slow and unsteady. I rely upon the walls – completely covered in dirty fingerprints from the many times I’ve taken this path over the years – to get myself to the bathroom. As I stand at the sink it feels like the entire room is tipping over. I catch a glimpse of someone in the mirror that is hardly recognizable. It suddenly clicks that the person I’m seeing is me…or at least a shell of the person I used to be. My face is swollen and pale, the dark circles under my eyes now seem to extend down to the middle of my cheeks. One eyebrow is raised and only half my face cooperates as I try to smile. My head hurts, my thoughts are foggy, and I feel anxious for no apparent reason. That same pit in the stomach you might get when you know you’re about to get in trouble for something. This is just the first ten minutes of my day. How can I possible separate myself from a disease that demands its presence to be known before I’m even fully awake?
The remainder of my day consists of planning meals from the few foods I’m allowed to eat and remembering to take the handfuls of medications and supplements at precisely the right times throughout the day. I can never just get up and go. For the sake of ease I often cheat with the food – which has its own set of repercussions. I have to think before I leave the house. Will I make it back home before lunch? If not I need to pack all the necessary before, during, and after lunch medications that are scheduled. If I go out today alone, will I be okay? What happens if I drive and start to have a panic attack again. I remember the one that landed me in the ER. I was certain I was dying of a heart attack. It got progressively worse over a two hour period and I swore it was going to be all over for me. That deep fear inside had me hyperventilating. And if I start having those panic attacks will it lead me back to the agrophobia that kept me from leaving the house for months on end? Do you know what it’s like to be afraid to leave your own house? Pacing back and forth across your house, looking out the window, putting your hand on the doorknob, then turning back and starting to pace over and over again. After 20 attempts you finally give up, cancel your appointment, and just crawl back into bed.
On days when the anxiety is low enough to get to my doctor appointment and do an errand or two, I have to weigh all the possibilities. If I go grocery shopping will that leave me enough energy to actually cook dinner? Is time with friends in crowded loud places worth the adrenal surges it causes? Neurological issues that will cause me to be in bed for days recuperating? But if I stay home and do nothing to avoid paying that price – all in the name of keeping my symptoms from flaring out of control – I become isolated and fall into a deep depression. Some of those dark pity parties have actually brought me to suicidal ideation. Too chicken to ever actually do it – I know that is totally up to God and his perfect timing. Besides, I don’t want to really die. I just don’t want to be sick, constantly feeling pain, and feeling worthless. Just a drain and bother to everyone stuck caring for me.
I need to carefully calculate every move, ever plan, every thought … But that’s right Jenny. Don’t you dare let your disease define you! You are not your disease! But this disease, without invitation, has definitely become part of who I am. How the hell can you separate yourself from a disease that dictates your entire existence. How do you just ignore something that runs through every fiber of your being – physical, mental, emotional, spiritual?
When somewhere down the road you realize that your disease HAS become a huge part of you and you can no longer deny that fact, you’ll see that you haven’t come to this conclusion on your own. Those closest to you who see your daily struggles also realize you can’t separate yourself from it. Sadly, it overflows onto those who love you and care for you. In as sense, it becomes their disease as well. Then all of a sudden there’s a new battle cry. What started as “You are not your disease,” turns into people telling you that you need to fight! That you are a “warrior!” That if you muster up enough fight and keep a positive mental outlook, that you will suddenly be more powerful than your disease. I have all the tshirts with slogans to prove it. “Chronic Illness Warrior! Lyme Warrior! Just Do It..Beat Lyme! F@ck Lyme and the Tick it Rode in On. Fight Like a Girl! Losing is Not an Option!” That’s right Jenny, wear these shirts, get into fight mode, and kick its ass! Don’t ever give up, don’t ever give in, don’t let yourself be sad. Suddenly you’re supposed to be this happy little warrior with your brave face on at all times. Declare how tough you are. Push yourself through the pain. Don’t let this disease steal your joy – just keep going out and doing fun things and never let this disease get the idea that it has the upperhand. Then this supposed strength you pretend to have suddenly deems you an “inspiration” to others. No pressure there. So the “I’m fine” mask stays on and breakdowns need to remain hidden behind my closed bedroom door where tears drench my pillows and sobs finally become so hard they become inaudible. In public I don’t dare complain about the pain. Keep telling everyone it’s no big deal…I got this…I’m fine! Let yourself fo so far as to declare how extremely grateful you are for your illness because it has made you stronger. And while that last part is actually very true – because I have definitely grown, gotten closer to God, and received many blessings throughout all of this – knowing that spiritual and relational good has come from it; it somehow doesn’t make the physical pain, the emotional hurt, or financial destruction any easier to deal with.
Just because I trust God, know that God has a purpose for my pain, that he works all things for good for those who love him, and that he is somehow using me through all of this…truly doesn’t make it easier. But I continue to fight. I somehow feel that victory over this disease would bring the greatest glory to the One who made it so. I believe with God in my corner that I have the necessary power to fight just a little harder. That if I just do everything I’m supposed to; if I do my infrared saunas, detox, do ozone therapy, hyperbaric oxygen therapy, stem cell therapy, strict medication schedule…That I will have power over my symptoms. I can make the pain stop if I just try harder. I can repair the damage the infection did to my brain if I do more puzzles and second grade math. My energy will come back full force if I just push myself to exercise every day. If I just stick to that paleo autoimmune anti-inflammatory diet. I will fight this disease with everything I got and I will win. Remember…I’m a warrior! You will NOT feel pain. You will NOT feel depressed. You will NOT get dizzy or faint! Be positive. Get more sunshine. Keep yourself busy so your mind doesn’t feel the pain that ravages every inch of your body. Block it out. Tell yourself that you’re not really sick. Pull yourself up by your bootstraps and do what you have to do. I’m constantly reminded that there are so many others who have it so much worse. So stop being a baby. Fight! Be a mighty warrior!
Inspire others so they believe they can happily get through it too. Come on Jenny, you’re a fighter. You can beat this disease down if you just do everything right. Do you’re infrared saunas, your detox baths, take call your medicine, get enough rest, avoid stress, balance your energy, don’t push yourself, ask for help. Do whatever you need to make it work. You can do it! You CAN get the upper hand on this disease!
Fourteen years into this and I’m coming to a new phase in my journery. I tried not becoming my disease, I’ve tried being a fierce fighting warrior, and yet….here I am. None of that has worked. Now I must come to that place of acceptance. Finally. While I still consider myself a strong fighter, I have also learned that no matter how hard I try to fix, manage, and control my disease – some things are just out of my control. I have no idea why God has chosen to take me down this path. But I do believe that God’s ways are greater than mine. That in His infinite wisdom – He is taking me exactly where He needs me to be. I trust Him. Today I have come to believe that my illness is actually none of my business. My pain is God’s business. If He wants me in it then nothing I do in my power will ever make it go away. So going forward I will not only try to accept my disease – I will try to embrace it.
Right now, I acknowledge that my joints hurt. I will allow myself to feel it. I will trust it is there for a divine purpose that it is not yet my privilege to understand. Instead of pretending it’s not really there…instead of trying to fight it…I will let myself just feel it. And then I will give myself grace just as my Savior gives me grace – over, and over, and over again. I will respect myself and love myself enough to not pressure myself into doing things that are beyond my physical capabilities if my symptoms are bad. I will say no to others requests when necessary. I will purposefully remove myself from stressful situations or conversations. I will accept and embrace the fact that I am not the healthy strong athlete I was prior to becoming infected. I will stop struggling to get back to the person I once was. I honestly didn’t like her all that much anyway. She was shallow, self-centered, egotistical, and always felt she needed to be the center of attention. Through this journey I have become more aware of what is truly important. I have become honest, humble, compassionate, genuine, caring. My pain and my needs have brought me so much closer to my God. My relationships with Jesus, my husband, my kids, grandkids, siblings…have all deepened in ways I was totally unprepared for. That was God working through my illness. I’m done pretending to have any power over my disease. That power belongs to God alone. Trying to control something that is out of my hands is exhausting. Sure, I’ll listen to my doctors and do things to help myself wherever I can. But I am no longer going to deny or fight through my pain – whether it be physical, emotional, mental, or spiritual. I will acknowledge exactly where I’m at. Accept it. Embrace it. And ask God for guidance and direction as what to do with my reality exactly as it is.
I am Jenny. I have a disease. I have pain and many debilitating symptoms. I am not powerful enough to cure myself. I accept that and will love myself and live my life accordingly. Being cured might not be how I’d be most useful to God and my fellow man. I must trust God’s plan for my life. I am a child of God. I am God’s masterpiece. I am fearfully and wonderfully made. I am adopted, holy, righteous and redeemed. I am more than a conqueror in Christ. I can sit on my couch in immense pain and stop struggling to fight it. I embrace God’s plan for my life – whatever that may look like. Because ALL of it is in His Almighty hands.