A PSA About Chronic Illness: 5 Things We Need You to Know (But May Not Know How to Tell You)

I’ve struggled with chronic illness for a little over two years now. I know that’s a drop in the bucket compared to people who have lived with this for several decades but I’ve picked up a few common factors that seem to thread through my conversations with friends and family who have various chronic illnesses of their own. Here’s my two cents. I hope it helps bridge the gap a bit.

1 - WE ARE MOST LIKELY NOT GOING TO EVER “FEEL BETTER”

By definition, the word chronic is an adjective that means ‘persisting for a long time or constantly recurring.’ For most of us, we have both. Our conditions are most likely lifelong and usually affect us every day. Some days can be better than others (we are thankful for those!), but all days are different from the way they were before we got sick. We are not our past selves anymore, things are very different now and we cycle through the grieving process A LOT because we are trying to wrestle with the reality that we will never truly ‘feel better.’ We’re serving a life sentence of sorts and it’s hard to accept. Most of us are also dealing with the difficulty of changing medications or altering dosages. Not only do we juggle the discomforts of our chronic conditions, but we also have to manage the side effects that can sometimes be worse than the actual symptoms of our illness. We gain weight, our hair falls out, headache medications ‘may cause headaches’ (how’s that for irony), something that’s meant to help one part of our body may damage another, something that has worked for 2 years is no longer effective, the pill that we need costs more than our weekly grocery bill, and on it goes.

It’s really hard to come to grips with the fact that our lives are changed and this is what things will look like as we move forward. New diets, new limitations, new ways of doing EVERYTHING. It’s overwhelming and often confusing. Please be patient with us. We don’t want to feel down or on edge but we also have to be allowed to experience the spectrum of emotions that come with this process. Some day we may find an emotional plateau if we can get our conditions under control and find some sort of status quo. Until then, please find a way to love us anyway. We know we can be difficult and we know it’s not always possible for us to accurately verbalize what we are going through, but we still need your support more than you’ll ever fully know.

2 - JUST BECAUSE WE LOOK OK DOESN’T MEAN WE FEEL OK

We hate that we are sick. It hurts that we are different than we used to be. We don’t like seeming like the “party pooper,” so we usually only interact when we feel we can put on a happy face for an extended period of time. This might be a few minutes or it might be a few hours but we want to seem as close as we can to the old version of ourselves. Often, we fake it. We still feel terrible most of the time, but we want to keep our relationships as normal as possible because it makes us feel as normal as possible and we want you to know that there are still some parts of our former self in there. No one wants to be the sick friend or family member. We don’t want to find ourselves being avoided because you don’t understand our diagnosis or how to talk to us about our pain. We get it, we were you before we were us. We didn’t know what to say to people like us either. So, we channel the person we used to be long enough to make you feel comfortable. This is exhausting but so is feeling out of place so we slap on a smile and kick ourselves into survival mode as long as we can.

3 - OUR ENERGY WORKS DIFFERENTLY THAN YOURS

Christine Miserandino came up with something called the Spoon Theory back in 2003. It’s a great metaphor for people who are fighting daily with consistent and persistent physical, mental, and emotional depletion that include pain, fatigue, and an overall inability to function at the same level as someone who does not suffer from these types of ailments.

According to this theory, we all start out each day with a certain number of “spoons” and this number may differ based on how you feel when you wake up. These spoons represent our total energy level for the day. For you, taking a shower may require 2 spoons of energy, for me, it might take 5 or 6 – maybe more if it’s a really bad day. It’s a matter of pacing and understanding that a person capable of ‘normal’ activity requires less overall energy to complete a task than someone suffering from a chronic illness. Those of us starting out with fewer spoons have to be incredibly careful and extremely strategic as we use them throughout our day.

Please understand that we wish we could keep up the way we used to. We don’t like that one social event can take us down for days or that we used to be able to tackle our normal activities without a thought and now those same to-dos’s send us spiraling into a flare-up that may take us a week to recover from. We want to be at your kid’s 4th birthday party or your annual summer bash, but sometimes we’re forced to say ‘no’ because our bodies simply won’t let us. The reality of this alone is physically and emotionally draining, but we have to protect what little energy we have. We will try, we don’t want to miss out. But please know it’s not personal. A few hours of activity can cost us a few days of needed recovery.

4 - WE NEED YOUR HELP BUT WE PROBABLY WON’T ASK FOR IT

I know, at least for me, there are two main reasons why #4 is true.

First, asking for help means admitting that we can’t accomplish what we used to. It’s hard to be honest with ourselves when it comes to our new set of limitations. We feel like we are failing as people, like some part of our worth is slipping away. This isn’t true, of course, but it doesn’t stop us from internalizing it. Fighting against our need for help only makes us need it more, but our pride and desire to remain as close to our old normal as possible often stops us from reaching out.

Another reason is that we can sometimes already feel like a burden. We have probably had to rely on others for some sort of help whether it’s finding coverage for our kids so we can go to doctors appointments, needing a ride somewhere because our driving is restricted or we’re simply in need of moral support as we sit in the physician’s office for the umpteenth time waiting on an updated prognosis. Asking for additional help with the kids for a day so we can simply rest or requesting help with cleaning our home because our bodies make it impossible to do it on our own feels selfish. We don’t want to drain the people we love and we don’t always have the ability to return the favor, so we just keep pushing ourselves instead.

Please ask us and, if we say no, insist anyway. We’re emotionally grappling with our barriers in a big way. We are absolutely NOT asking you to do anything beyond your own capabilities and resources (we understand you have limitations, too!), but if your time and health allow we need you to help where and when you can. And don’t hesitate to remind us that it’s ok for us to accept an outreached hand, even if we can’t reciprocate. We would benefit greatly from this reassurance.

5 - WE APPRECIATE YOU MORE DEEPLY THAN YOU KNOW

We know this change in our lives has most likely caused a change in the lives of those we love the most. We are different now, we are hurting and we are trying to come to terms with the hard realities of our situation. Your support, help, love, patience, and kindness toward us do not go unnoticed. We couldn’t get through this journey without you. You are an extension of God’s mercy in our lives and to our immediate families. Your sacrifice makes all the difference, we are blessed by your actions and we are eternally grateful.