Trying to get better with a chronic illness is a long road filled with massive roadblocks. The symptoms of being sick are standing in the way of trying to recover. If you have a chronic illness or an autoimmune disease then you’ve likely wondered how on earth you’ll overcome the daunting obstacle of trying to get better when you feel miserable. And while we may be filled with hope and perseverance at the beginning of our journey, the years wear on us when there’s no assurance that we will be able to get better.
For the past six months I’ve been suffering from either a lupus flare or cold-like symptoms – or both – more often than not. Actually, I would wager it’s been twice as often than not. The ongoing agony builds up and feels like it will crush me. I have started to loathe my couch and my bed because I’m so tired of spending time on both.
My situation has been made worse by having a toddler (lots of germs inherent in taking mister sticky fingers to places and playdates) and the winter season. That doesn’t make it any easier to be sick for so long and so often. And when I say sick, I mean Sick and sick. Capital Sick, as in, something chronic like my lupus or my muscle pain is causing me issues, and sick, as in a cold, respiratory infection, or other acute illness.
When I get a cold or something like it, the symptoms drag on well past when they should end due to my immunosuppressant medications. If I pause those meds, which I have done a few times to help me get over something, then I almost always have a lupus flare.
As I write this, I’m suffering from an upper respiratory infection that’s persisted for nearly two months. In between the bad days my lupus rash, joint pain, and/or pleurisy flares up, making it almost impossible to do the exercise or physical therapy that I need in order to cope with pain. Most of my pain comes from muscle tension in my shoulders and neck that never really goes away but is worse today.
So why am I writing when I feel so miserable? Because I almost always feel bad enough to justify a day in bed. It’s either write while I feel miserable or don’t write at all. Yet the effort it takes to work through pain and suffering is huge. Sometimes it’s insurmountable. Have you ever tried to do something while you’re very sick? It takes everything you have to get it done. When you have to overcome sickness nearly every day of your life it feels suffocating.
I keep finding myself here again, at the bottom. So many times over the past few years I’ve started to climb up the stairs to a higher level of health and wellness, but I never make it very far. And I keep getting knocked down by one thing or another: medication side effects, flares, fatigue, acute illness, teething nightmares, toddler tantrums, busy schedules… and now that I’ve found myself at the bottom for the umpteenth time, I’m struggling to find the strength to try again.
Recently I was writing an email to a family member who’d asked how I was doing. I started to type that I had just been prescribed a new medication and I was hopeful that it would make a difference. Then I realized that it would have been at least the third time in as many years that I had written that exact sentence to her. So I deleted the words. I didn’t want to have to talk about failing another medication in a few months if it goes that way.
My hopefulness has dimmed so much that I can hardly see it.
So how am I supposed to get better? There is never enough time during my brief periods of good days to make real progress. I want so badly to get better, stronger, and have more good days. I just don’t know how to get to that point when I’m walking down a road of sickness. It’s unbelievably discouraging. And I’ve felt this way for a long time; I wrote this two and a have years ago:
“In the depths of my sickness, I never imagined that I would achieve any semblance of a normal life again. All I could see was pain stretching out endlessly into the distance. At times my strength of will faltered when I faced that long road of pain… I could not withstand being alone with my pain. I couldn’t look it in the face for more than a few minutes; it was too much.”
– In the Depths of My Sickness with Lupus.
Once I was diagnosed with lupus I truly thought I would get to a place that at least resembled remission. I had to hope that there would be better days ahead in order to keep a grasp on my sanity.
I’ve been sick for almost five years and diagnosed for three years. Even though the medications for lupus have lessened my lupus symptoms, they aren’t gone. They have just been knocked down from constant and excruciating to intermittent and difficult (and occasionally excruciating). I also have chronic muscle tension pain that has not been helped by my lupus treatments, so it’s not directly caused by lupus. Even if every other symptom gives me a break, the muscle pain remains.
I’ve tried – to date – over 30 different treatments for my muscle tension pain, yet it has hardly moved along on the improvement scale. I’ve come to believe that my muscles became tense due to the stress I experienced throughout the year I spent extremely sick before diagnosis and in the year following – while I waited for the medications to work and tried different ones. I was inactive, in fact, I was largely bedbound for those years due to high levels of pain and fatigue. My tense, weakened muscles were not given the chance to resolve through exercise.
I think my muscles are stuck in that tense mode and must somehow be retrained to relax and behave normally. I don’t know this for sure, but it’s my strongest suspicion (and also the result of trying just about everything else that should have worked for regular muscle tension issues). So you can imagine my frustration at still not having the ability to exercise properly and regularly because of feeling sick so often.
My struggle to get better has been the greatest struggle of my life. Harder than grad school or pregnancy – in fact, it’s the only struggle that I’m not sure I’ll conquer. But I’ve tried. I’ve done everything within my power. I’ve laid on the floor crying from pain while doing my physical therapy. I have pushed through incredible fatigue to exercise – just for ten minutes, just to feel a little better. I have made the appointments, seen the doctors, taken the pills, done the pacing, reduced the stress, and ticked off all the boxes. It’s hard to hold on to the fight, to keep showing up to the boxing ring despite all my defeats.
I haven’t yet come to a place where my mind is ready to accept that my whole life may continue on in this manner. However, I’ve recently been thinking about giving myself a break – pausing in my efforts to get better. This is largely thanks to Brianne Benness, a chronic illness advocate, writer, and storyteller. She wrote an article, The Myth of Getting Better, where she explores the reality and the grief of not getting better. Brianne talks about how trying to get better and failing can make you feel poorer. It’s quite damaging to one’s mental health. She points out the value of trying to make her functional periods longer instead of trying to make her whole life better.
Brianne also started a conversation on Twitter where she addresses “the underlying assumption that all sick people should be trying to get better at all times.” I had never really thought about that before – about simply taking a break from trying to improve my health. She makes a point that is almost revolutionary in the chronic illness world: that we don’t always have to be trying to get better. It’s burning so many of us out, the endless hoping and unfulfilled health goals. It’s certainly burned me out.
On the other hand, there’s the thought that my burned-out ashes will create something new and beautiful – something I barely dare to hope for. Listening to a sermon recently, I heard this statement about being broken:
“At the moment that a seed goes into the ground and it starts doing what it was created to do, to break apart, to change form, so that it can produce what was in it – at the moment of its greatest realization of potential, it is broken and hidden.
So that means that in my life sometimes, the greatest moments of my maturity, when God is really growing me and really using me and really making a difference through me, are going to be the moments where I feel like I’m breaking.”
– Steven Furtick, Your Season To Succeed.
This resonated with me, because I feel like I’m breaking apart. I feel like I am changing form. I feel like I am hidden because I’m so often stuck in my bed or my house. And I struggle with the concept that this breaking is producing fruit – that I’m suffering in order to make a difference, but I can’t deny that I have done and experienced some incredible things since lupus first broke me. I’ve also received a few gifts from chronic illness.
Of course, sometimes we plant seeds and they don’t grow.
Feeling physically broken for so long puts a weighty burden on a person. I can hope that the process will produce something beautiful, but I’m currently drowning in feelings of sickness. I simply want to come up for air. I want to leave behind the times that I lie in bed unable to even hold a conversation with my husband because the pain has taken such a strangling hold on me. There is so much in life that I want to do, see, and accomplish. I’m tired of being held back.
I don’t have the words to describe how difficult these past few years have been. And I don’t have a plan for getting better. All the plans I have carefully made have fallen short, and I haven’t the strength to come up with the next one. I’m just going to do my best to hold steady for now.
While my overall pain and sickness have felt crippling over the past several years, there have been some very bright moments. I had my son and we traveled with him to Barbados and Curacao, though those memories are peppered with the pain that also traveled with us. I hope that the things that make me feel joy will be able to carry me through this struggle. They may not carry me to getting better, but being carried is better than the alternative.
“And I urge you to please notice when you are happy, and exclaim or murmur or think at some point, ‘If this isn’t nice, I don’t know what is.”
– Kurt Vonnegut Jr., A Man Without a Country.
Have you ever felt like you’re too sick to ever get better? What has helped you?
How am I supposed to get better when it seems like I’m always sick? via @MyMeenaLife Share on X
Oh Ava, my heart hurts reading this post! I’m so sorry to hear that after so long you are still struggling. Although my health problems are on a much different scale than yours, I’ve also grappled with the question of whether I should even be trying to “get better” since the inevitable disappointments are extremely discouraging and the constant focus on “fixing the problem” just seems to decrease my quality of life. I am thinking of you and sending you all the well wishes that are possible through a computer screen. ❤️
Thank you, Danielle. It’s a tough balance between wanting to improve our lives but having to take a break after not finding success for so long. I hate that you’ve had to deal with health issues for so long as well. I really appreciate your kind words. 🙂
Hi Ava: I'm friends with your wonderful mother-in-law Lynne. We met at church. Two of my first cousins have lupus. I've suffered with a severely debilitating complex chronic illness called myalgic encephalomyelitis, commonly known as ME/CFS (Chronic Fatigue Syndrome) for 27 years. It's tough, but the Lord gives me grace & strength for each new day. I'll be praying for you.
Tammi, thank you so much. I appreciate you connecting and sharing with me. 🙂