How To Be Sick: A Short Primer On Living Well With Chronic Illness

It is possible to live well while chronically ill.

This article first appeared on The Refresh and has been republished with permission. 


No one expects to develop a chronic illness. After all, the common narrative around health is that people who get sick either get well within a certain time frame or they pass away. But for many people, there is a universe in between that requires daily navigation. According to the National Health Council, 133 million Americans live with ongoing, incurable conditions. There is little doubt that chronic illness brings challenges above and beyond coping with symptoms. Health (or the lack thereof) impacts every aspect of our lives. But, it is possible to live well while chronically ill. Here’s how:

Build Your Team

Coping with a chronic illness can be daunting for anyone — both for those newly diagnosed and for those with established issues. One of the most important things to do is to build a team of people who can help you. The helpers might not be people you would expect, and those you might expect to help may not be willing or able. Focus on those who are in a position to support you, knowing that you would do the same if the tables were turned. And, if they ever are turned, reciprocate. Fortunes can change in a heartbeat.

Finding a good doctor (or other licensed health care practitioner) who understands your particular issues and who is willing to go to bat for you is worth its weight in gold. It might take some time and effort. When I first was diagnosed with Lyme disease as a teenager, I saw over 50 doctors in 3 states. At the time, doctors didn’t really know what to do, so I kept getting shuffled down the line. In recent years, I’ve crossed paths with a handful of excellent physicians who are intelligent and compassionate. It makes a world of difference to have a higher level of care — but I have had to be very proactive in seeking it out.

One of the hardest aspects of chronic illness is the vulnerability that comes from having to ask for help. Most people really dislike having to speak up and ask, but sometimes, it is necessary. And, at some point in life, just about everyone takes a turn on this carousel — sometimes, we need help and other times we can offer it. No one gets through life alone. If you are living a moment in your life when you need help with something, be brave enough to ask and humble enough to receive with gratitude. Someday, you may be able to pay it forward.

Find What Brings You Joy

There is the misnomer that if you are sick, you must be miserable. That’s because most people who experience acute illnesses are miserable — temporarily. But, when you have a chronic illness, you’re in a marathon, not a sprint and you need all of the inner resources you can get. One of the ways to cultivate resilience is to seek joy and allow yourself to find it, to savor it — without guilt. It is not being disloyal to the reality of your illness to enjoy yourself.

When I was 15, I was too sick to go to high school because of Lyme disease. I had had to leave school. Most of my days were spent in severe pain, while coping with crushing fatigue and a laundry list of other symptoms. But, every three weeks, my mom would take me to the local mall. For a few hours, I wasn’t wrapped up in the identity of a sick person, I was just a teen strolling around the mall, remembering that there were other humans who didn’t wear white coats. I needed the mental break. I needed that sense of relative normalcy. The physical symptoms didn’t go away, but it was vital to have some time where I wasn’t consumed by them.

 

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But, when people started saying things like, “Well, if you can go to the mall, why can’t you go to school?” I was upset. They didn’t see that that trip to the mall required me to recover from it for the next week. Or that I was paying a price with more pain by even attempting exertion. I asked my mom if we could go to a mall farther away outside of our local area, so that I wouldn’t have to run into people I knew. I needed anonymity so that I wouldn’t potentially be in the position of having to defend or explain something that was already confusing to me. I didn’t know why I hadn’t gotten better or why the second round of IV antibiotics didn’t work. I already had felt like I had failed at getting well. I didn’t need to be reminded of it during one of the only enjoyable things I still had in my life. I wanted to browse the book store and record store in peace. I wanted to walk by Cinnabon and inhale the scent. I wanted to see that there were healthy people in the world and imagine that I still was one of them. And, even if I wasn’t, I needed a few hours a month where I could pretend. I hoped I was looking at my future.

Ditch the Idea of Perfection

Repeat after me: there is no one perfect diet, perfect healing regimen or perfect mindset that will cure all people of all things. There are, however, plentiful options and if something calls to you (and is generally recognized as safe), it is worth a try. Maybe you feel better as a vegan. Maybe you crave meat. Maybe you need to be gluten-free. Maybe you prefer Paleo or any number of other eating styles. Experimentation will be your best friend. Try it and see how your body responds (unless you have a specific reason for why you shouldn’t proceed). Keep a food and symptom diary and learn to make connections. If you are able, it is a good idea to consult with a nutritionist who can help address your particular needs. Staying nourished to the best of your ability will keep you stronger. Part of living well with chronic illness is maintaining the level of health you have, whatever that may be.

Move Your Body Every Day

Human bodies are designed to move on a daily basis. When you are in pain or fatigued, it Is so hard — SO hard to want to move around. But, the problem is that the less you move, the more pain will increase and it becomes a vicious cycle. Move your body every day to whatever extent is possible — even if that means doing gentle exercises in bed or having someone assist you. This is crucial for maintaining muscle strength and bone mass. Our bodies require the resistance of gravity in order to keep us strong.

Reach Out — Farther

When dealing with illness, one natural instinct is to crawl back within yourself like a turtle into a shell. Sometimes, this is completely appropriate and necessary, but other times, it is important to reach out to others. We are social animals and as such, human connection is powerful. It is good to have a balance between solitude and interaction and only you will be able to discern what that means for your situation.

You may lose friends while sick, but you also may gain new ones. This is actually a natural course of life. Some people drop into our lives for a season, whereas others remain. I discovered over years of living with chronic illness that the new friendships I made that were the most lasting were the ones in which illness was not the only thing we shared in common. I found I clicked with others who were interested in books, music, social justice and art history. Illness was spoken about in passing, but it was never the sole topic of conversation in our friendships.

When I was around 18 or 19, I joined a pen pal list for people with the same kinds of health issues I had. This was in the pre-internet days, so we all wrote each other real letters that we eagerly sent and awaited replies to. Getting mail was the highlight of my day. Twenty years later, many of us are still in touch. Most of us had some level of improvement in our health, but because we had become true friends, the core bonds remained. I’ve visited them and stayed at their houses. They’ve stayed at mine. I’ve been invited to their weddings and celebrated with them as they had children. The connections that had started because of illness had evolved into so much more. Find your people. It might take some time, but they’re out there, and often closer than you think.

Offer the Benefit of the Doubt

Be prepared to get all kinds of advice and comments about your health. Establish your boundaries, be clear and remember that most people mean well. Chronic illness makes some people uncomfortable — it is a reminder of our collective mortality. And, some people simply love you and want you to feel better and don’t know how to express that in any other way beyond offering advice. I have heard all kinds of “suggestions.” At the end of the day, you are the expert on your life.

Consult Dr. Google In Moderation

We’ve all been there. A new symptom pops up and before we can fully articulate what’s wrong, our fingers are flying over the keys to consult the esteemed Dr. Google. While I absolutely agree with educating ourselves as a means of advocating for our wellness, some caution should be exercised. That sneeze could just be a cold, not a life-threatening lung disease. If you have any doubt, instead of Googling for symptoms, do a search for a good specialist in your area and get checked out. After you have had a diagnosis is a better time to do your research.

I once saw a doctor who thought I might have a serious, progressive disease. She mentioned the name of it, but said, “Don’t go home and Google it.” Of course, I went right home and did just that. It wasn’t pretty. What she thought I might have required daunting diagnostic procedures and there was no cure. I didn’t have anxiety before I read about it, but afterwards, I felt unsettled. This only increased when she left the practice not long after our appointment and I didn’t have a chance to follow up with her. Fortunately, it was later confirmed via a different doctor that I did not in fact have this scary condition. It was a huge relief. I regretted the time I had worried for nothing. The internet has everything, but not everything on the internet applies to you or your situation. So, if a new symptom or concern pops up, slowly back away from your device and consult a skilled practitioner who can help you assess what is happening. Your physical and mental health will thank you for it.

Love Your Life

There is a difference between loving something “because” and loving something “in spite of.” You may not be happy with your circumstances. You may be in the midst of extreme struggle. You may feel lost and scared and alone. But, throughout everything, what you are living is yours — these days are your life. Learning to fall in love with your life opens up a wellspring of strength.

It doesn’t mean you love or even like being sick (who would?). It means acknowledging that your life — to quote poet Mary Oliver — your “one wild and precious life” — is of value both to yourself and to the world. Right now. For Always.


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