Life on the dark side: Behind the mask of chronic illness

I used to be fun. At least I think I did. I know I was more fun than I am now. I enjoyed life, was active, and social. I had plenty of energy. I was the type of person that got things done. I was always up for a challenge. I craved excitement. I didn’t require much sleep, and was always ready to get out and explore the world. I loved having people around. Almost every weekend was filled with a whirlwind of activity. I vaguely remember that person. I know deep down she’s still there, but it seems like she existed in another life, or that maybe it was all just a dream.

These days, things are much different. Most of the time, I hardly recognize the person I have become. I have allowed the dark side of life with chronic illnesses to alter my personality and negatively impact how I view and approach life. I’m still the same person on the inside. I still have the desire for adventure and excitement. Unfortunately, that is not often reflected in my daily life.

Maybe that’s why living with constant debilitating invisible illnesses is so hard. I know that I look healthy and normal on the outside. The world has no idea how much physical and emotional effort goes into looking like nothing is wrong. They don’t know that taking a shower drains every ounce of energy I have and usually requires me to lay down for extended periods of time to recover. They can’t see the pain that I feel in every muscle and joint in my body. They don’t see that my skin feels bruised all over. Those that have never experienced it couldn't possibly understand the overwhelming exhaustion that never goes away no matter how much sleep I get. They can’t feel the constant companions of dizziness, nausea, and shortness of breath. They don’t see the anxious underlying panic that I try so hard to hide. A person who has never had emotional problems can’t comprehend the weight of depression and the irrational fear, insecurity, and neediness that go along with it.

At times, my mind tries to convince me that my situation is hopeless and that I’m worthless. I can usually hide my silent tears and struggles. I can mask my pain with a smile. I can fake normal for short periods of time. I have mastered the art of disguise. However, it requires a huge amount of energy to go out in public or spend time with family and friends. Energy is something that I don’t have enough of. I certainly don’t have any to spare. I have to choose how I spend it carefully. I can only pretend to be ok for short periods of time, and it is beyond exhausting. 

I want so desperately to feel better. I have searched for miracle cures and relief for years. I’ve spent a small fortune on medical expenses and tried my share of crazy alternative treatments. I’ve endured the fun side effects that go along with pharmaceutical drugs. I’ve been poked, prodded, scanned, scoped, and tested more times than I can count. I have gained weight from drugs and inactivity which only makes my pain and fatigue worse, adds to my depression, and lands a pretty harsh blow to my self confidence. 

I’ve prayed that God would restore my health and heal my mind and body. I know He can do that, but so far He has chosen not to. I know there’s a purpose and that He’s refining me and giving me opportunities to grow spiritually. I know that others deal with hardship and illnesses that are much worse than mine. I know that I am blessed and have so much to be thankful for. I KNOW ALL OF THAT, but to be honest, there are moments that I can’t force what I know to be true in my head make the connection with what I feel in my heart. Some days, I’m just not ok. I think everyone has those kind of days every once in a while. 

There are times when I just want to be able to do normal things and spend time with people I care about. I want to make plans to do things with others. I don’t want to make another excuse as to why I can’t. I wish I could be spontaneous and carefree instead of strategically planning my day according to my medication schedule. Even when I take every natural remedy and prescription in my arsenal, I am still lucky to function well enough to do any activity more than a few hours a day. Even then, having to do things several days in a row wreaks havoc on my body. I am tired of having to choose between going to an appointment today and getting out of bed and getting dressed for the next few days. 

I used to go church or the grocery store without giving it a second thought. It was just a tiny part of my day. Heck, I used to get groceries, clean the house, do laundry, and even walk several miles before going to work all day! Now, some of those activities are impossible, and the others deplete my energy reserve. Then, my body requires days of rest in order to recover. When I try to do too much, I get worn out fast. That makes me frustrated, angry, and irritable. Nobody wants to be around someone who is moody, short tempered, and negative all the time. When I get like that, I don’t even want to be around myself! That’s a pretty rough place to be!

When I’m at my lowest, I need reassurance and comforting more than ever. Ironically, it’s during those times that I withdraw, push people away, or cause them to distance themselves from me because they don’t want to deal with my rollercoaster of emotions. That only makes the situation worse and leaves me feeling alone and broken. 

I want to be able to better serve my church and community. My heart longs to join others on mission fields throughout the world. However, I’m learning to accept my limitations and admit that it’s not always possible to do the things I want to do. Serving the Lord doesn't look like I think it should, but I'm trying to be content in my circumstances and focus on what I can do. Most of the time I am able to count my blessings and not focus on the bad stuff. But sometimes, keeping a positive outlook is harder than it seems.

It makes me sad that I don’t spend enough time with people I love. It breaks my heart that I didn’t go to the beach with my friend, Wendy, before she passed away. I was afraid that I wouldn’t be able to pretend to be ok for that many consecutive days and that she wouldn’t understand. I didn’t want to show her my weaknesses. Now, it’s too late. No matter how much I regret the opportunities I missed, I can’t get that time back. I hate that I’m not able to keep up with my Grandchildren, or even pick them up and hold them without having muscle spasms for days. It upsets me that I can’t ride in a vehicle for more than a few hours without hurting so bad that I have to fight back tears. It frustrates me that I’m not able to paddle a boat on the lake on a warm sunny day. It’s ridiculous that it takes me days to prepare a meal for my family because it’s too difficult to do it all at once. I am embarrassed about all of the things that I’m not able to do. I know that some people probably think I’m just lazy and should suck it up and move on. I may have felt that way before my body turned against me.

I used to enjoy talking on the phone and catching up with friends. These days, texting is my primary method of communication. You don’t realize how much focus it takes to engage in conversation until your mind and body are overwhelmed and leave you in a state of constant distraction. It’s much easier to hide the painful truth with cute emoji’s. 

I used to love to read, and often read a book a day. Now, I can’t focus well enough to comprehend a paragraph without rereading it several times. It hurts my hands, arms, and wrists to hold a book. I won’t even go into the discomfort of trying to sit long enough to read a chapter. When you don’t feel well, it’s hard to do the things you once looked forward to. Sometimes, it feels as though my life is being stolen one small piece at a time. 

I never thought about how much of our social life revolves around food until I found out that I have Celiac disease. Gluten is everywhere. Even when foods don’t contain wheat, barley, or rye, they may have trace amounts of gluten. Even a tiny bit may cause an autoimmune response that can have serious consequences. For someone with Celiac, gluten causes the body to essentially attack itself. It weakens the immune system and makes the body vulnerable to multiple complications that could eventually lead to devastating illnesses like Cancer, or even death. I don’t like to call attention to myself or my health problems. In an effort to keep folks from thinking I’m crazy, dramatic, or obsessive about not eating gluten, I handle the situation in a healthy grown up way. Yep, I just avoid eating out and social gatherings altogether. 

I know this sounds awful, but sometimes I’m jealous of those who are able to effortlessly do the things I still want to do. I want to be the fun wife that my husband married. I want to be the energetic Mom and Grandmother that my children and grandchildren want to spend time with. I want to be the friend that is always up for a day of shopping, or a last minute girls trip.I want to be the person that is always there to help someone in need. I want to encourage and inspire others. I want to be independent, confident, and strong. I want to be able to think with a clear head, instead of one that is clouded by pain and fatigue. I want my life back. I want to be able control what is going on inside of me. But, I can’t always get what I want. 

I’m not looking for sympathy. That’s not why I’m sharing this. I guess I just wanted to raise awareness about a few small ways that chronic conditions change lives.

People long for love and acceptance. We crave connection with others, but we exile ourselves out of self preservation. Eventually, our circle of support dwindles to only a faithful few. We don’t allow people to truly see who we are because we fear rejection. Instead, we use our energy to create the illusion of normalcy. Being real, and living a transparent life is difficult. Allowing ourselves to be vulnerable puts us at a greater risk of being hurt by the people we need and trust the most.

For those who fight your own invisible battles every day, you are not alone. I see the tears that haven’t fallen yet. I recognize the pain behind that smile. I hear the desperation you haven’t put into words. I know that separating yourself from others is often necessary, and always lonely.

For those who love someone who is struggling to accept their new normal, remember that the one you care for is still in there, even when it seems that every trace of them is gone. Try to understand things from their perspective. Be patient and willing to listen without judgment. Support them when they get overwhelmed and emotional. I know that is easier said than done, but your compassion may be their only lifeline when they feel like they are drowning is despair. Forgive them when you feel like they’ve let you down. Love them even when they try to push you away. Don’t give up on them. They likely need you more than you will ever realize. 

Sometimes, giving your feelings a voice brings healing. It’s ok to be honest about your struggles. We all have them. Life isn’t easy for anybody. The path to wellness looks different for each of us. The one thing we all need, is to feel loved in spite of the challenges we face. We are stronger together than we are apart. 

If you notice that the spark in someone’s eye is growing dimmer by the day, be the beam of light that helps guide them out of the darkness. 

Chronic Illnesses often create a sense of isolation and loneliness. However, feeling alone is not the same as being alone. We are never truly by ourselves when we give our lives to the God who created us. He tells us that He will never leave us. I’m so thankful for that. I’m also grateful for the people He sends to walk with me, encourage me, and be a light when my world is dark. 

Never lose hope. Storms don’t last forever, and the sun overtakes the darkest night when morning comes. There are brighter days ahead. 

If you are struggling, look for the light.
When you are able, BE the light!