While the World Struggles With Temporary Isolation, Mine Is Ongoing

The Story We All Share: I recently had to make a detailed list for my doctors of tasks I could and could not complete during the day at home. And if I could do certain tasks the modifications I make, and if I cannot do tasks why. It was overwhelming to say the least.

As the days have passed since finishing it, I started to think back about how long ago some of these started. Stiffness and pain in my fingers while typing papers, constant pain in my neck trying to drive around. But before that… long before even. So I decided to write. Not just for me, but for the others.

Early on in the investigation of my symptoms, my PCP asked me when was the last time in my life that I felt well. “Well” in the normal sense that I observe in other people’s lives. I cried. I have had a few years here and there that were definitely better than others, but the answer was…. never.

Going through a long list of tasks and modifications reminded me just how normal modification have become. It reminded me of just how many things I used to be able to do, that at some point, I slowly stopped doing all together. I stopped driving much not long after my now-husband and I became friends. Then I stopped dancing and teaching dance. I spent years fighting to “get back” my movement, but I just never seemed to stay better.

What got to me the most was the things I used to do with my husband and my children that I have long since stopped doing. Hiking. Long picnic days outside. Spontaneous adventures and road trips. Time with friends? I can’t list a whole lot of things that I stopped doing with friends because it’s been years since I could really get out regularly with anyone and even if I did, I spent days at home hardly doing anything else. Grad school? I barely functioned for at least two days after every class seminar. Sometimes longer.

The thing is though, the most painful reality for people like me is just how few people are invested enough in our lives to notice the changes. Changes in how we move, changes in our vocabulary and how we think through problems or handle stress. Who notices when we say yes, or when we say no when we used to say yes? Unless, out of the blue, a friend started asking specific questions, they wouldn’t know how often I have to be lifted out of bed or how many days a week I use my elbows to open doors instead of my hands. And I’m not alone… just one of many.

Not only isolated against our will but we are isolated with so few possibilities to communicate what help is when someone asks. When they do, I struggle to answer because I know there is likely not a single physical experience you’ve ever been through that could help you understand what I might need or why. Or that I need help with it every single day. There are really no words to express that having a positive outgoing personality and a smile on one’s face doesn’t mean I’m somehow better that day. Often it actually means I’m physically worse and coping with so much pain that I desperately don’t want to think about it. It means that what I really want is anything resembling even the smallest moment of “normal” that other people have. I want to enjoy passing the time of day, or a simple joyful connection with another human being.

While the world struggles with a few weeks of isolation, those of us with chronic illness have been in isolation longer. Church services and special prayer meetings weren’t put online for us before. We gaze out of windows watching people live their lives and chase their dreams. We watch our children play in the sunshine, and try not to grimace and cry when someone asks why they haven’t seen us in a while.

The Unsung Truth: We watch. We listen. We constantly feel we are missing out on love, adventure, stability and friendships, and eventually we teach our bodies to feel as much joy as possible from the simplest of things that others may have never thought of before. Such as writing down a poem Sam had in his head. A short stroll to the mailbox. Or getting dressed without pain for one day out of 20.

We see. We hope. We grieve. Some people have more success than others at teaching their bodies to adapt and change, not only how they do things, but the emotions they feel when they do them. It’s necessary. Simply because there are few other people we can look to for real emotional support. Far beyond a shoulder to cry on, or some need to express all the grief. Those things happen, but what happens more often if I need to celebrate the things we have learned to celebrate. Like eating with a spoon and not dropping it.

Some people celebrate a big promotion or a debt paid down. Others, a new business! Or an artwork finished. We, on the other hand, we long for people who will celebrate that we got out of bed that day! We need people who don’t take it for granted that we answered the phone, because I not only could hold the phone to talk to you, but I was awake to do it! That’s fantastic!

We can be brutally honest about how we are doing physically. Not because we don’t think you’d understand, and not because we need your pity. It’s just a fact. How we are doing, just like what we celebrate, has the same face but a completely different reality. Your reality is you might have had a frustrating time with a co-worker, or you have a child acting out. Our reality is we have probably had both those things, while our brains are simultaneously coping with pain like fractured bones and a long list of modifications we have to make in order to deal with the co-worker and love the child without causing the disease to flare and put us in bed for a week.

Your kids are home now and you’re learning to teach your daughter some math and reading. We have to teach our children all of their lessons, but we also have to help them cope with emotions of sadness and rejection when we don’t get to see their new project fast enough. Even worse is if they built it somewhere we can’t reach with our bodies. We have to teach them that mommy’s firm tone of voice is not anger with them, but fatigue and pain that’s gotten so bad we can’t cover it up. Then we have to help them through the anger that wells up against the disease in that moment. And we have to hold them as they cry about what the disease is doing to their mommy.

I don’t often struggle with depression, and when I do I respond very well physically and mentally to natural remedies. I’d say I’m probably not typical in this. So many men and women who struggle with an inflammatory disease and chronic pain are lonely, depressed or surviving by suppressing all of the emotions of their reality. I’m also blessed to have a spouse who sees every moment, loves every moment and is willing to be Superman every day so I can get out of bed. I know there are others like him, but I also know that it is not always the norm. Many of us are without even a spouse who has this kind of compassion. Many more are single and possibly trying to live alone or with family under constant stress.

What you can do: If you have a friend who struggles with chronic illness, here are some things you can say to them to truly be a friend and help their normal be normal for you too. Tell them you are sorry you haven’t really seen them before or felt what they must be going through, but that this pandemic has changed your experience. Ask them what things in their day hurt the most. Ask them what tasks they do that bring them moments of joy and triumph. Write these down. Ask them what tasks they might choose to do that they will pay the price for later. These are particularly important, because they’re usually the ones that make other people think we are OK and ultimately go unnoticed because they are so “normal.”

As a friend, you can make our normal a part of your normal too. You can notice when they choose to do an activity that you know will cause them pain and possibly days to recover. Appreciate them for being with you when they do it. If you see them doing it on social media, be sure to comment and celebrate it with them! And then check in on them several days afterward until you know they are doing better. Keep appreciating them too. Focus on the joy. Help them make this sacrifice without having to think about what they are sacrificing quite so much.

This pandemic has perhaps cancelled some of your vacations and activities. Maybe it’s made life extremely scary and difficult. Believe me, I very much do understand and do not want to belittle those emotions. It’s probably the first time you’ve been in this kind of situation. But for your friend with an inflammatory disease, the things that were canceled for them are not just sad and difficult. It was probably one of the few things they’ve been looking forward to for anywhere from weeks to months, or perhaps years. An event can be replaced, but the hope of anticipation for a much needed moment of joy and normalcy crushed? Over, and over again.

I hope you hear. I hope you see. We few, we happy few, we band of brothers and sisters in suffering are here, writing to you. If we don’t tell compelling stories, then others won’t understand unless they go through it themselves. Stories can bridge the gap between information and experience. Stories give meaning. We might be hurting in a way that you don’t understand, but I promise — we tell them because we love you so much and want to be in your life.

For more on the coronavirus from our community:

• 5 Parallels Between Life During COVID-19 and Living With Chronic Illness
• How Will I Know If It’s COVID-19 or a Chronic Illness Flare?
• The People Who Can Guide Us Through the ‘Uncharted Waters’ of COVID-19
• The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19