I’ve struggled with exactly how to say what’s on my heart during this Corona virus world isolation. So this is for everyone that loves someone with chronic or mental illness. I want to help you better understand isolation life. This is also for anyone who is suffering; may it remind you that you are not alone. I would say most people feel like their lives have been flipped upside down. Schools have closed, jobs have been lost, stores are lacking necessities… etc. But today I want to talk about the people who’s lives haven’t changed all that much. This is about the people who live day in and day out in isolation. If you know someone who lives a life of isolation I pray that this time in the world will change how you love and care for the ones who live this reality on a daily basis. When all of this passes and you go back to life the way it was before, try not to forget what it was like and be determined to support the ones left behind. I want to share my experiences as a voice for the isolated. As you read, please try to use your current experiences in isolation as gift to understand the people in your lives better who live this way all the time.
Let me tell you how it typically goes so you can put yourself in your loved ones shoes. You get sick and suddenly your world starts to change rapidly. You don’t know yet that this will never again go away. You assume you will recover. You start going to the doctor and they start running painful and expensive tests. You are referred to specialists and all the while you are getting worse. No one can tell you what’s wrong, it takes months between appointments at times and you spend hours upon hours on the phone with doctor’s offices and insurance companies who refuse to work together. You are in survival mode and you can’t even fathom getting out of the house. Any additional illness could take your life. You have become almost completely isolated. You start depending on constant help from your partner/caregiver and your world has flipped upside down. You are mostly in bed because of pain, you can’t cook your meals, you can’t even do basic care like bathing or going to the bathroom without extreme pain and at times not even without assistance. You and your partner/caregiver are completely mentally, emotionally, and physically exhausted. You both handle the waves of grief of what your life used to be and what you thought it would be differently. You argue over things that one or the other can’t understand. You keep seeing doctors but you can’t work and your partner/caretaker can’t work a regular job anymore so the income slows down and the bills just keep pilling up. You scour the internet for answers and hope. You find treatments centers and tests. You feel like you’ve had a crash course in medical terms and have nearly earned an honorary medical degree. You start to loose faith in many of your doctors because you start to realize how little they actually know about your condition(s). You find yourself instead educating them and being met with blank stares and confused looks while hearing phrases like ” I’ve never seen this before” or “this is extremely rare”. Worst of all are the times they make you feel stupid for the things they don’t understand. You travel out of state to the best hospitals you can find. You live in hotels and go through excruciating painful treatments and tests. You trial medication after medication with promises for results only to be met with life altering and at times life threating side effects. In the beginning you tried desperately to remain “normal” for your friends and family. To fix your hair and put on make up, to dress in normal clothing, to smile and laugh, to pitch in on birthday presents that you didn’t have the money to spend. People close to you know you are struggling but they don’t know the half of it. You open up a little about your struggles but are met with uncomfortable silence or they try to make light of it to cheer you up. They say things like “You look just fine” to them. They say things like “I hope you feel better soon” as if this is just a cold and not something that has plagued you for years with no end in site. When you get admitted to the hospital the first few times people are there. They call you and text you. They send flowers and bring meals. They offer financial assistance and send cards of encouraging words, but as the years go by and the illness continues the people slowly fade away. You are so fragile that a single illness could take your life or send you to the hospital, you can’t see people in the flu season at all so for about 6 months of the year you are even more isolated than you usually are. It doesn’t take long for people to forget you. The invitations stop coming because you always have to say no. The calls and texts stop coming because they keep asking if you are “feeling better” and the answer is still “no”. No one comes to visit. Everyone else’s life continues on and yours feels stuck in a loop of pain and mere survival. You start to blame yourself and make excuses for your friends and family who have all but disappeared. You think “Well I pretended around them so that they didn’t know how bad it was and when I couldn’t pretend I just isolated myself to make them comfortable”. “They are just busy! I’m sure that they actually care but they have kids and jobs and lives to live…”. People send you DMs trying to sell you essential oils and products like plexus and Herbalife. They literally see your illness as a paycheck. You’ve been all over the United states dealing with some of the best centers in the world and all this time you just needed this oil or powder drink?! Sometimes you cry because when you decide to share small pieces of your reality instead of being met with compassion and support you are met with people sending you very unwanted and unhelpful advice about things they don’t know anything about. You try to remember some of them may genuinely want to help and you try to believe the best in them. You remember the times you try so hard to look presentable and force yourself to go to dinner and smile all the while inside remembering how it takes so long to get dressed because you have to sit down and rest every few minutes. How you run fever all day from the inflammation and pain. How your legs turn purple and swollen from being out of bed for too long. How you wear long dresses to cover how skinny your legs have become and even your tights are loose. How you get in the car when it is over and as your partner drives you home your body crashes. You loose the ability to speak or walk so they carry you inside. All you want is to be laid on the bed but you have been in public and your immunes system is compromised so the only choice is for your partner/caretaker to help you change your clothes and wash up before they put you in bed. You have nightmares and night sweats every night. But nobody else sees that part. They only saw you dressed, talking, and smiling… they think “surely it isn’t that bad”. They don’t know that you laid on the hard bathroom floor naked completely limp unable to dress yourself just hours before or hours after. They judge you based on what they see. Going out is always a huge hurdle. The anxiety of getting sick from exposure, the energy it takes to get out of bed to put on sweats and get to the car. You need help and have to take breaks even to do that. there is no hair fixing or makeup applying anymore. Those are luxuries for people that have access to energy that your body no longer possesses. When you get home you always have to sanitize completely. Shoes off at the door, wash hands, change clothes, sanitize phone. Nothing comes in your house without being sanitized. Every time anyone comes into your home you have a great deal of anxiety over what they may be bringing. You try to set boundaries and only allow people in who respect your health needs by not coming when they are sick, people who take off their shoes when they come in, wash their hands immediately etc. But even then it’s awkward and anxiety filled and it’s easier not to have people there at all. Having people in your house is riddled with exhaustion. You have to get out of bed and put on something appropriate, you have to sit up and visit, you have to smile and give mental energy. You want visitors but you just aren’t up for making them comfortable and you are still trying to protect them by looking “okay” even when you’re not. You’ve become completely dependent on a wheelchair and care giver. You can’t wear anything other than loose sweats because your body is in so much pain. “Getting ready” is a thing of the past. The reality is that even though you can’t do those things, sometimes you don’t even want to. You miss wanting to and you want to want to. It’s hard but you just aren’t up for it physically or mentally, because perhaps you also deal with severe depression, anxiety, PTSD, CTSD, OCD etc. Perhaps you deal with daily wishing for death. Begging your heart to just stop beating. You struggle to eat, you can’t gain weight, you cry…a lot. You do your physical therapy every. single. day. You are determined to keep fighting and to keep pressing on in spite of the suffocating pain and darkness that envelopes you. You are stronger than you know. I think the hardest part comes when you realize you won’t survive this life of pain without support so you finally become vulnerable to tell the people closest to you exactly what you need and they never come through. When the depression becomes so severe that you fear suicide is inevitable you cry in anger because you don’t want that to be your story, you don’t want that to define your life. You know you are so much more than the depression and pain and yet you absolutely can not fight this beast alone. You remember all the times the media has blasted news of another celebrity suicide or even times you’ve seen people in your own life react when people die that way. What is it they always say? “If they had just reached out for help…”. That makes you SO frustrated because you know they are only saying that to make themselves feel better. You remember how many times you’ve asked for help, how many doctors you’ve seen, how many medications you’ve tried, how many devastatingly painful treatments you’ve done, how many healthy diets and exercise programs you’ve tried, how many friends and family members who you’ve asked to contact you on a regular basis that don’t. You start to think maybe people choose suicide because the people scream at them through their actions “you are a burden. My life is too busy to call or text you once or twice a week or to visit you by your bedside once a month, sorry”. I’m sure they don’t mean it that way but that is how it feels in your experience. You feel lost in the hypocrisy. Because of your immune system you can’t be around large crowds or anyone who is sick. Your friends and family don’t accommodate your illness. It feels as though they think you are making it up because after all it is invisible and they’ve certainly not seen the worst of it. They continue on with all of their plans as they have always done. It’s been years but you still have to ask if anyone is sick before seeing them because they just don’t remember to tell you. It still isn’t on their mind. They tell you last minute “oh so and so has a cough and runny nose but it’s totally fine. Oh and so and so had a small fever yesterday but no big deal and no fever since then.” They say the sick people will be there and then they make you feel bad when you decide to stay home. They still don’t get it. You tell them it’s totally fine because you don’t want them to feel bad, but you hang up the phone and cry. You cry because you are missing your friends or family, you cry because they still don’t understand after all this time, you cry because it feels like they don’t value your life enough to make sacrifices for you to participate. Then you blame yourself for them missing you and you blame yourself for their lack of education on your situation. It’s a vicious cycle.
Then something like the Corona virus comes along and shakes everyone’s world up…except yours. I mean it effects you in the sense that it is certainly yet another life threatening illness and the economy in general effects your already massive medical debt and lack of steady income. But the isolation and quarantine is your daily life. The sanitizing is your daily life. The social distancing, no handshakes, hand washing, not going in public sick, avoiding people…etc. ALL normal and necessary for your daily survival. The very people who have abandoned you in your years of isolation start posting about how hard isolation life is… and they’ve only been doing it for a few days. They start posting about feeling depressed and anxious. You try and find compassion in your heart because you know what they are going through is a challenge for them and yet deep inside you start feeling an emotion you’d rather not admit your feeling. It’s anger. Anger at the masses. Anger at how blind they’ve all been to the hurting and to the isolated in their lives. Anger that now that it’s affecting them they take it seriously. Before, you were labeled the “hypochondriac”, you were the “dramatic one”, you were “ridiculously over protective”. You try to soften your anger at the unjustness of it all and at the same time find compassion for them. You know that what they are going through is only a fraction of the years of isolation you have lived through and on top of it all you were in it seemingly alone. You weren’t just home watching TV and eating whatever you wanted while doing all of your socializing with everyone else online. You have been home for years in severe pain, mental agony, clawing your way through the days and all the while you are watching everyone else living their normal lives. Going to birthday parties, going on vacations, celebrating holidays, going out on dates, going to school…etc. You want to scream to the world that what they are experiencing is only a small taste of what the chronically ill community faces daily. In fact aside from the economic effects this has actually in some ways made our lives easier! We now feel like everyone is finally trying to protect the vulnerable from illness. We are finally able to participate in “gatherings” online with everyone else. Stores are giving special store hours for immune compromised families. The advice is spreading like wildfire to “reach out often to your friends and family, call don’t just text, FaceTime, send cards or packages in the mail, pick up food or groceries and drop them on their porch, sit outside the window and visit 6 feet away”… etc. They are right…this IS what it takes to love someone well who lives in isolation. You start to wonder if when all this passes if people will remember how hard isolation is? Will they be able to imagine what it’s like for you and the other chronic illness sufferers? You wonder if when it isn’t the whole world in it together, when it’s been years with no end in site, when it includes so much physical, mental, and emotional pain, when you ask for help but the medical world doesn’t have the answers yet and people are too busy… you wonder if they will remember you.
I think some people have the misconception that those of us who live with chronic illnesses are just used to it, that this is just our life. Most of us try to live as normally as we can through the pain. We still have moments of partial function that can look “normal”, but pictures and social media certainly tend to be our highlight reels. We still smile and laugh between moments of tears, pain, and despair. In order to mentally live with this much pain you do have to come to a place of acceptance, but acceptance of your disabilities does not take the “hard” away. I’m going to ask you to Imagine with me for a minute. Imagine if you had the flu. You knew it was the flu and the doctors ordered you to rest and drink fluids until you get better. You are going to be in bed from the body aches, fever, weakness, shakiness, nausea, headaches etc. It would be ridiculous to expect yourself or anyone in your situation to get up, get dressed, fix your hair, put on make up, and go about normal life. Yet if you absolutely had to, on a slightly less symptomatic day, you may even be able to convincingly fake it through an hour of seeing someone without them knowing how miserable you were. What if someone saw you in that one moment and then judged how you felt at your worst, based on how you looked when you were pushing yourself way past what you thought you could on your “best” day? You would get home and crash into bed, you probably slowed your recovery down quite a bit from going out when your body didn’t have the strength. You are in pain, your body is covered in sweat and chills. Now imagine this continues for days, weeks even. You aren’t getting well. Doctors are getting confused, they start poking and prodding you, running tests and looking for answers. You get nowhere with figuring things out. Some doctors send you to other doctors but referrals and insurance takes time. Meanwhile you are still miserable, people in your circle bring you soup and flowers for the first few weeks, eventually that stops because they can’t do it forever. People know you don’t feel well so they don’t invite you places, and they don’t call or text so as not to be a bother. You wish desperately to hear that people are thinking about you and praying for you but you are too weak to reach out or respond when they did weeks ago. Months pass and you wonder when you will find relief. This cycle continues but so does life. You can’t live on hold forever so you start trying to do some housework in your weakened state, you try to open your own curtains, your body fights you every step of the way. You collapse on the floor, you’ve lost consciousness. You call your partner home from work to help you back to bed. Yes, by this point your partner/caretaker has had to go back to work to pay the bills that just keep coming… now more than ever with all the doctor visits and hospitalizations. Years go by, you’re still sick, but you are somewhat adapting to being miserable all the time. You force yourself to do things that need doing, if this was temporary everything could be put on hold but this isn’t temporary anymore. You have waves of grief, of anger, of immense sadness over what was and what you thought would be. You are lonely, so very lonely, people have all but disappeared. Some slowly, some quite suddenly. Some truly cared but didn’t know what to say so they didn’t say anything at all, some couldn’t understand it so they thought you were pretending and blamed you and walked away. People want you to get over it already, They are confused as to why you still complain and talk about it. After all, it’s been years. They roll their eyes at the attention they assume you are seeking. You find yourself in therapy sobbing over what is and how it is perceived. They guide you to acceptance. “It just is”. You still have emotions and battles but you have to live the best life you can in spite of the disabilities and pain. Not everything makes sense. People think it gets easier over the years but actually the longer you are sick the weaker you become and the deeper the mental struggle goes. Do you learn ways to help cope? Yes. Do you find things to help at times? Yes. Does it ever go away or get easy? No. I ask you to imagine with me one more time. Do you think day 5 of the flu is worse or day 3,652?
So in this time of isolation if your world has been a bit flipped upside down I am choosing to find compassion in my heart towards you. I desire this to be a time of educating the whole world on how to better support the isolated! I choose to find something positive and to choose hope that good will come from this hard time in the world. If we all choose compassion for other people’s lives that we can’t understand then this hardship can make us all better. We MUST do better to love the people that are hurting! May this time of forced slowing down remind us to never be too busy to help support a hurting friend. May this time of painful isolation remind us to be more consistent to visit and check in on those that are always isolated. May this time of adjusting our events to include everyone continue when there are only one or two who need adaptions to participate. May we show them they are loved and valued in the midst of their suffering. May we remember to show them that they are worth fighting for. We are all fighting battles no ones knows about. Let’s all choose to be kind and believe each other and support each other. Let’s all lay aside judgement and eye rolling, and assumptions. We really only know our own story. Choose love.
Keep Fighting,
Amy
Living Life With Chronic Illness. 