The one thing that everyone who’s suffering from a chronic illness wants is to get better. But don’t compare your progress to others – you are unique and your road to healing is unique, too.
We know that our disease can’t be cured, but we hope for and can reasonably expect to manage our disease to some degree – enough to see and feel some level of progress. And the possibility for some level of healing means that there is reason to hope.
We have an abundance of resources available to us. Many of them don’t even require that we leave our home. Or our sofa. We’ve never been in a better position to explore vast amounts of published information on our diseases. We can easily identify institutions and specialists with expertise in our condition – even if they aren’t in our location.
And we’re comforted by being able to connect with other people who are navigating the same uncertain path of trying to both treat and accept a disease that can’t be cured.
So what’s the problem? Glad you asked. Because the pitfall of all of this information and “connectedness” is that we have a tendency to draw direct comparisons of our perceived progress (or lack thereof) to the progress of others, or to the statistics published in medical journals.
Don’t expect your journey to recovery to look like anyone else’s
Don’t go there. Why? Because I’ve been there already, and I’m here to tell you that trying to compare your progress to someone else’s or to an entire group of “someone elses” can wreak tsunami-sized emotional havoc on you, unless you keep it in the right perspective.
This applies to virtually any type of situation, regardless of whether the progress is oriented toward managing a long-term, chronic illness, a serious potentially life-threatening illness, or recovery from an addiction.
When I was diagnosed with an aggressive form of cancer in 2004, my first question was about my prognosis. What are my chances? Will I live long enough to raise my kids? Will I be here when they start high school? Who’s going to help the girls get ready for their first school dance? What about college? I have so much to do! They need me!
Being informed is good. Comparing your progress to someone else’s isn’t!
That’s the thing. A prognosis is really about a comparison.It’s important to be informed about our diseases, treatment options and their effectiveness, and side effects (short and long term). We need to know the facts. But the best way to use the information is to understand that we have choices in our treatment and can weigh the risks and benefits.
Being informed also helps us to understand generally what we might expect. For instance, there’s peace of mind in understanding which side effects are common. You may or may not experience them, but if you do, you’ll at least understand that it’s not unusual.
Looking back, my oncologist never gave me a prognosis – until I asked him. I remember the day I asked. I was expecting some percentage (the higher the better, please) that would give me confidence that I could realistically survive. That’s not the kind of answer I got. He said, “I can make this go away. The challenge is keeping it away.” I read between the lines, sort of, but I walked away with trust and with hope. Why? Because he didn’t give me a textbook answer, and to me, that meant that he recognized that there are nuances to treating a disease that doesn’t always play by the book.
Fast forward to my diagnosis of a rare autoimmune disease. I’ve made a point to remind myself that I need to think beyond the textbook information and the experiences of others.
That’s the first reason why you shouldn’t compare your progress to others: as individuals, each of us is unique. And there’s a distinction between being informed and comparing your progress to others.
You are unique – so don’t compare your progress to others
Comparing yourself and your progress to others is what’s dangerous. Because you’re not them. Although you’ve been diagnosed with the same condition, you are biologically different. You (or the person you’re comparing yourself to) may have genetic predispositions that are an advantage or a disadvantage. You or they may also have underlying conditions that complicate the disease. Beyond being biologically different, you are different in many other ways, too. Your lifestyles may differ, too.
If you compare your progress to someone else’s you run a pretty big risk of having expectations that may or may not be realistic. You may feel like you’re failing. And if you feel that you’re failing you’ll lose hope.
Everyone is at a different place in their journey
Another reason not to compare your progress to others is that your journeys didn’t begin at the same time or follow the same course. Think of it as though it’s a Monopoly game board. Maybe you got sent to jail. Or weren’t allowed to pass “go” or collect $200. You’d have a hard time passing the thimble on the game board (do they still have that piece in Monopoly? Damn, I’m old…) to get to Park Place if you got waylaid a few times and are just now making your way to Virginia Avenue.
It’s easy to forget this when we hear about the progress others are making. You might have noticed this if you’re in a support group. But if you read carefully – and read between the lines – you’ll most likely find that there’s a great deal of variation in how people progress with their treatments. We don’t always know why. They might not know why.
What we do know is that there’s rarely anything good to be gained when you compare your progress to someone else’s. It’s not a competition. And you don’t have complete control over the rules of the game anyway.
Chronic illnesses and autoimmune diseases are tricky
Many conditions are complex, and chronic illnesses and autoimmune diseases are no exception. Autoimmune diseases in particular are extremely difficult to diagnose. On average, it can take more than four years for an autoimmune disease diagnosis. Many have similar symptoms. The symptoms are often vague. It’s not uncommon for someone to develop more than one autoimmune disease.
Beyond the difficulty of diagnosis, treatments are not always as clear cut as we’d hope. There are a number of drugs that are used “off label” – they were originally developed for another purpose but have been found to be effective for the treatment of certain autoimmune conditions.
You can probably guess where I’m going with this. These diseases can be pretty unpredictable. Treatments – once the right combination is found – can take quite some time to work. Progress isn’t linear. I remember feeling lousy, gradually feeling better and then feeling worse. It’s recovery whiplash, and it’s best not to expect it to look like someone else’s.
We know that it’s stressful enough to be chronically ill. It’s even more stressful to place expectations on yourself that you may not have complete control over. And we all know that stress can make a chronic condition worse.
So when you’re tempted to make a comparison, the only comparison you should make is to yourself. Compare yourself to where you were when your journey with chronic illness started. How far have you come? Not only physically, but emotionally? What have you learned? Focus on yourself – on staying inspired, being grateful for the progress you’ve made so far, and living forward.