Recently someone I don’t know well questioned the severity of my illness. This isn’t a new problem. Lots of people have questioned the severity of my illness, or compared me to someone else they know who suffers less and accomplishes more while having my illness. And it got me thinking about the ways I might differ from others, or the media might inaccurately express what my illness is like, or that people might assume a person in my situation would or should act and feel.
As I contemplated this, I realized something. I am a walking snowball effect.
It isn’t fair to any person dealing with a difficult diagnosis or suffering from chronic illness to place constraints upon their situation, saying they should act a particular way. We all have different perspectives, different pain levels, different coping skills, and different lives. There isn’t one way to deal with illness. There are millions of ways — at least as many as there are people with illness or disability — to deal with illness. But I live with an extra layer of struggle, because I have many diagnoses. And while one illness might be manageable, four or 13 or 22 of them might not be manageable in the same way.
I’m not the only one who lives in a space where one medication can mess up another system or illness, and then need to figure out how to cope with the second problem, the solution to which may cause complications with illness number four and require surgical interventions. Many people are diagnosed with more than one illness or problem. Many people have co-occurring illness.
Coping with multiple issues can be a bit overwhelming, and it adds a layer of challenge that might not be present for the friend of a friend who has one of my illnesses in common, but runs 5k races. My asthma alone might keep me from running a 5k, but my asthma and my fibromyalgia and my labral tear in the hip and my
arthritis in the pelvis and my social anxiety definitely combine in ways that makes my running a 5k a ludicrous suggestion.
I am not that friend of a friend. I am a walking snowball effect.
Comparing and contrasting people with disability is not appropriate. It isn’t a good use of time, and it isn’t often beneficial to the person with the disability. I suppose if you were to say to me, “Christy, you cope with things so much more effectively than that other woman,” I might find that momentarily helpful. She would not likely find it helpful, but I might have a moment of accomplishment and pride. But I would never want to have that accomplishment and pride at the expense of another. And I recognize that I don’t know the situation of that other woman fully, and she might actually be coping with 37 things while I am struggling with 11..
Another thing to consider is the fact that many forms of illness have cycles or levels or progressions that might make some days better than others, so comparing my worst day to another’s best day isn’t an accurate way to assess my skill with coping.
Here’s the thing: Illness is not a competitive sport. The severity of my illness can change. Some people have more challenges than others.
And what people are allowed to do is to offer compassion and understanding, or ask me to share my story, or support my efforts to be as well as I possibly can. What people are not allowed to do is compare and judge and criticize a situation that they know little about.
Our society seems to be sort of leaning toward judgment as a national pastime. We are constantly telling people how to be, and how not to be. And that is a really sad thing — possibly even a dangerous thing. But, especially in the case of another suffering from chronic illness or disability, that judgement is never a healthy and positive thing.
I don’t often look sick. But I am. One day I might look less sick than another, but that doesn’t mean I am cured — there is no cure for my most affecting disease — or that I will remain in that state for the long term. I mean, maybe someday, after a hip surgery and allergy testing and well-managed symptoms and really good medications, I could run a 5k. But that doesn’t mean I will always be able to run a 5k. I might run one and have a terrible flare and end up in the hospital and never run again.
Because I am a walking snowball effect.
And having not just fibromyalgia, but also PTSD, GERD, asthma, allergies, deviated septum, sleep apnea, arthritis, hip damage, SI joint problems, a splinted hand, bursitis, neuropathy, generalized anxiety, depression, degenerative changes in particular joints, and more I can’t currently recall or that is yet to be diagnosed, means that I have to cope with all of the things some of the time, and some of the things all of the time.
And one challenge or change can lead to another and another and another challenge or change. It snowballs. The problem gains momentum and starts to plow over whatever is in its path, growing ever larger, and adding struggle to struggle. Having any form of disease is difficult. Having chronic conditions that affect you long-term is difficult. But having multiple forms of disease to manage, and trying to maintain stasis in a body that is affected by all sorts of chaotic symptoms is extremely difficult.
I’m not comparing and contrasting here. I’m not attempting to say that people with more than one illness have things harder than others. Offering judgments is not the way I choose to live. But what I do want to express is that it isn’t fair or kind to assume that you know what another is dealing with. You don’t know how many challenges they face. Even if they tell you about some challenges, there could be lots of other challenges that they have not expressed.
I want to explain that some of us who cope with illness, actually cope with much more disease than you might know or understand. Some of us are constantly dealing with multiple struggles and symptoms. And comparing us to people who have less struggles or less symptoms or more management or better coping strategies doesn’t help any of us.
We are all on a path, a journey, that leads us in directions that another might not go. Our journeys lead to different destinations, and there are different obstacles, and to compare and contrast those differences does not change the path or the challenges and blessings that each might offer.
I am a walking snowball effect. And my path includes the occasional, out of control, roll down the hill to smash to pieces at the bottom. So, when you question the severity of one condition, you ignore much of my story and miss what is happening at other points in the journey.
The other day at occupational therapy, a couple of the OTs and I were talking about my upcoming surgery. And I said, “At least it fixes something.” One of the OTs replied, “Yes! We are crossing things off the list!” Since that day, crossing things off the list has become a bit of a mantra, and when I am in that office receiving care, one of the therapists will often use it as an encouragement. “We are crossing things off!”
And when I have moments where I am looking at the long list of ailments or maladies and it seems overwhelming, or on days when one thing is leading to another and the snowball is threatening to roll, I use that mantra.
We are crossing things off.
I am coping with things one by one as they arise. Whatever can be healed or improved, I am working to heal and improve. And over time, even if the snowball effect happens, there is less snow to be picked up and dragged along down the hill. Over time, with good care and more coping skills and better management and medication changes and surgeries and therapies, I will cross symptoms and struggles off the list.
And that doesn’t mean I won’t still be dealing with the effects of multiple maladies. I will. But it does mean that my snowball won’t cause as much damage, or roll down that hill as often. I can find a space that holds optimal health for me — in my body, on my journey, with my obstacles. And that space need not be compared or contrasted with the space of anyone else. Because they are in their own body, on their own journey, with their own obstacles. I can honor their space, and they can honor mine.
In some ways, even with the differences between us, we are all in this together. Because each and every person who copes with disease or disability is at the core doing the same thing. We are all trying to manage symptoms. We are all trying to gain greater wellness. We are all trying to eradicate what is harming our bodies and minds, or to cope with what is harming our bodies and minds if there is no cure for what ails us. We are all fighting the good fight and trying to have our best life, despite the challenges we meet on our journeys.
We are all crossing things off the list.
So, honor the space of the others in your presence. Understand that we all deal with different things at different times and in different ways. Try not to compare and contrast us with others in harmful ways. And, if you wish to be helpful, support us in our efforts to cross things off of our lists. Assist us as we work toward wellness, in whatever form that takes. We know our journey. We understand the obstacles. Join us in overcoming and making it farther down our path, with or without the rolling of the snowball effect…