Remember those dreams you have had, where it seems like you are walking around under water? Everything moves in slow motion and the weight against your limbs is oppressive. Your mind is fuzzy and no matter how many times you shake it, no clarity comes. And finally, you wake up. But for people with auto-immune conditions and other chronic illnesses/disorders, this is an existence they never wake up from.
I interviewed 25 people with an inflammatory condition called Sarcoidosis. It is a condition in which the immune system over reacts to things unknown and creates masses called granulomas. Usually, the white blood cells build up in the lungs first and then can go to the eyes, the heart, lymph nodes, the kidneys. Actually, Sarcoidosis is an equal opportunity invader, because it can potentially invade any area of a person’s body. Symptoms include difficulty breathing, body aches, chronic pain in the affected organs, rashes, and fatigue. By far, the symptom that seems to be the most misery making, across the board, is the fatigue. I think this could be said for any auto-immune/inflammatory disorder. The medical community is torn as to why this is so pervasive in chronic illness, but it is very real and very debilitating.
I asked these patients to tell me, in their own words, what this fatigue is like, so that we, the not-affected ones, can better understand one of the toughest parts of having an invisible illness.
- “The fatigue is oppressive. I have heavy eyes, arm and legs that mimic the weakness after a long work day. I wonder if my body is responding to a confused brain or is it my mind is refusing to focus on anything outside the realm of rest?”
- “Fatigue comes on like the snap of a finger. All my energy is gone and I have to sit down on the floor and my family has to help me to bed. I can’t hold my head up. I can lift my arms. I don’t even have the energy to open my eyes.”
- “It is debilitating. There are times I am afraid to drive for fear of falling asleep behind the wheel.”
- “Shortness of breath makes it worse. It feels like I am walking through mud. Everything I do takes so much effort, and that’s just getting out of bed.”
- “I am in a coma-like state.”
- “There is brain fog that goes with such an extreme fatigue, you just don’t know if you will make it. Even resting doesn’t help.”
- “You find yourself saying, ‘If I just close my eyes for 5 minutes, everything will be ok,’ and when you wake up you realize you slept 3-4 hours and you are still feeling drained of energy. It’s the kind of tired where you don’t want to do anything, breathing is exhausting. You stand up, only to sit back down. Very draining!”
- “You feel like you are made of lead. When you sleep, it is profound and deep, but once you wake up, you feel like you didn’t even sleep.”
- “No matter how much I sleep, it is never enough. It feels like I ran a marathon on one hour of sleep.”
- “Hard to put into words. Almost like a walking zombie.”
- “My husband feels like when he wakes up, he is already weak. He feels like he is walking around with a 50lb pack on his back.”
- “The only way to describe it is that it feels like my body has no life in it.”
- “My body and soul are exhausted.”
- “Beat down. I feel like I am in quicksand. Can’t stay awake but can’t sleep either.”
- “This exhaustion makes me feel out of control. It is debilitating.”
- “It is like the worst case of the flu you have ever had. Everyday.”
- “Simple tasks can’t be done. Coffee doesn’t wake you up. 12 hours of sleep does nothing to relieve the fatigue. I don’t talk to loved ones, family of friends. It has taken my life away from me, changed me from the man I once was.”
- “It is nauseating fatigue that is so powerful, it can knock you down and hold you there for however long it wants. You have no control over it. No food you eat, no medicine you take, no exercise you do can cut the control it has over you.”
- “I struggle with guilty feelings, thinking I am just being lazy.”
- “Heaven help me when I have to go up stairs. I just want to cry. I push myself everyday just to make it through and it’s an effort, to say the least.”
- “Sleeping 23 of the 24 hours in a day and then doing the same thing the next day.”
- “I used to operate at 100%. Now I am lucky if it’s 10%.”
- “It feels like when you are having a procedure done and they have given you anesthetic and it is just beginning to work. It is like the split second before you go out, body extremely heavy, and you know, if there is a fire in the building, your just gonna have to burn.”
- “I tell people that I feel tired to my soul. Every inch of me fights to perform daily tasks. I am consistently fighting against a current blowing me backwards. I feel so tired that even death looks like a welcomed friend.”
- “Sleeping just doesn’t cut it, and at the same time, sleeping is about all I can do.”
I can’t imagine the quality of life a person would have, who suffers from chronic debilitating fatigue. So many things would be adversely affected–being able to work, caring for children, responsibilities around the house, a romantic relationship. How would a person survive if they felt like this, yet lived alone? No wonder those with chronic illness struggle so much with depression. To be the kind of sick that doesn’t go away. To be the kind of tired that never gets relief.
My hope is that when you read this article, you can step, for a few minutes, into the shoes of someone you know who has a chronic illness or disorder. The statistics show you have a person or two in your life who has a chronic condition and the crippling sluggishness that usually accompanies it. When you find yourself losing patience with them for always cancelling plans that you have made or when you feel the resentment building because all of the house work now falls on you, remind yourself of the words my Sarcoid friends shared. This is, by no means, an existence they would chose. It is miserable to be sick like this, but to have to endure judgement and lack of support on top of everything else, well, that makes life truly unbearable. There is nothing people with this draining weariness would rather do than feel energized and go about doing the things they want and need to do. Let me encourage you to treat them with kindness and understanding. That is the least we can do to help them to feel better. And remember, you never know when it is going to be you who gets a diagnosis of a condition that sucks the life right out of you. And you would want people to be kind to you.