Stop Making Chronic Illness a Competition
Out of everything we have to experience under the broad umbrella of chronic illness, I think many would agree getting the diagnosis itself can be the most difficult challenge. The constant appointments, having to explain what you’re experiencing, even though some symptoms are hard to put into words, experiencing a lack of faith in the medical system when it becomes a trial-and-error for a doctor to understand you and what you’re going through. It’s a collaborative effort and often is timely and frustrating, to say the least. Many of us spend time alone questioning if what we’re going through is “real” and whether or not it is something we can just “suck up” and live with, without having to continue to run around with doubt.
I was lucky enough to end up with a partner who has the same chronic illness I have: Ehlers Danlos Syndrome, hypermobility type (hEDS). Although his symptoms are relatively mild and he oftentimes internalizes what his experiences are, I know he understands when I go through flares or have days when I’m frustrated with being the way I am. His mother is the reason why he received the gene and she lives with more complex symptoms than what either of us do, but I’ve found it always seems to be a competition as to whose symptoms are worse.
This leads me to this moment right here: I want to talk about the competitive natures within chronic illness.
This isn’t exclusively between people who have a similar condition to you or, in fact, have the same condition as you. I want to bring up how friends and family have a tendency to compare symptoms to symptoms, like their fatigue versus yours. Or even how healthcare providers constantly expect us to explain how we were diagnosed over and over again, even though we’ve been down the road and back enough times to know we no longer have to question whether or not they have gotten it right. The chronic illness umbrella has a culture engrained in it where many of us constantly feel like we have to explain ourselves to others so they understand us, rather than just accepting the world will not always want to.
When I first spoke to my general practitioner (GP) about the possibility of being an Ehlers Danlos syndrome patient, I was greeted with a sharp “humph” as she looked over my bloods on the computer. She then turned around, sighed, and said, “Well, even if you do have ‘Ehlers-Danlos,’ we can’t do anything about it now. You don’t have enough of the symptoms for it and are fairly well.”
She had used quotation marks when she stated “Ehlers-Danlos” and I found it hard from a patient point-of-view to keep my calm. I struggle to understand why the healthcare field has a tendency to blanket symptoms of a patient and then deny patients who have milder symptoms because it isn’t the picture they’ve learned for the disease. Ehlers-Danlos syndrome is a versatile disease, it has a tendency to vary between patient to patient, so no patient presents the same. A doctor may see multiple EDS patients with feeding tubes in place, but may end up seeing a hypermobile, stretchy-skinned individual and dismiss this diagnosis because it doesn’t fit the clinical picture they’ve learned for EDS. I’ve found friends and family are incredibly similar to this. We generally, as humans, want to categorize chronic illness into what we can see, rather than understanding it does contain a large portion of subjective characteristics.
I was diagnosed November 2020 by the same specialist as my mother-in-law, the same specialist who treated her symptoms for over seven years. When I was diagnosed as a mild-moderate case, he emphasized I’m not a brittle individual and I’m very “high-functioning,” therefore I must not be very sick. I found issue with this, not because I am feeling my symptoms be belittled, but rather because most of his assumptions came from the fact I answered with a stiff upper lip. “You must not be very sick because you still manage to hold nearly a full-time position at work,” which was completely dismissive to the fact I explained my fatigue is unrelenting at times, I get postural blood pressure drops, I can’t stand still long or it exacerbates my symptoms and also because I have no other way of keeping my income going. This example is relative that my experience was demeaned because I do not fit the classical picture of what he sees as an EDS patient.
I’m sure many of you have joined support forums (much like ‘The Mighty‘) where people share their experiences and what they’re going through to try and find a sense of belonging. The reality of this illness is it is very isolating in nature. We often do not meet friends, or even family, who understand what we go through and how hard it is to push spoons into categories we aren’t prepared for. I’ve found individuals have often complained about chronic illness competition, where they share their experiences to gain validation of what they’re experiencing, but sometimes are knocked back with how much worse other people have it and how they shouldn’t be complaining.
In a world where EDS affects around one in 5,000 people, this can be detrimental to someone. We seek validation often because we experience so much trauma trying to navigate our way through a system that oftentimes doesn’t lead us to feeling supported or even treated, for that matter. The comparison between the milder symptoms in one versus severe symptoms in another doesn’t show how each person can experience the same symptoms and the same emotions related to how those symptoms affect their everyday life. One person may present differently because they cope at a higher level, another person may struggle because this is the third thing they’ve had to endure that day.
The reality is regardless of how severe you experience your illness, it is entirely up to you on how you cope with that and embrace it. It shouldn’t be a rat race toward who is sickest in the pack, but rather how we can embrace our similarities and support each other through it. How we can create an environment where people feel they can establish trust and knowledge in a community.
I’ve always been a firm believer power comes from education. We can see an improvement in the way treatment plans are created by educating our healthcare providers, friends and families on what our day-to-day experiences are and what we need from them to provide support. In the case of my mother-in-law, I actually went through a stage where I questioned if my illness was truly properly diagnosed because each and every time it was mentioned, she tacked on “mild” in front of it. Even though my orthostatic symptoms are moderate, it was always labeled as “mild” in comparison to hers. My point in this is we should stop viewing illness as a tier system and understand it is a spectrum that contains similar experiences.
The other comparative factor many of us deal with is having able-bodied, healthy individuals compare their everyday symptoms to what you experience constantly, regardless of what you eat, drink or take. I struggle constantly with the idea people assume I am healthy simply because I look like I am. “You are too young for these issues.” Or, “But you don’t look sick!”
I want to know what society thinks a “truly ill” person is supposed to look like. Are we supposed to represent our terminal patients? Is this not demeaning to their experiences as well? I wish I could simply count on one hand how many times I’ve had fatigue symptoms compared, but unfortunately, I don’t have enough hands. I’ve found society wants chronic illness to be something we see, because if we see it, then we can understand it and label it. Society doesn’t see the days you physically can’t get up because you’re in too much pain. Society doesn’t see your insomnia for the fifth night in a row, even though you’ve taken absolutely every tablet you own to try and sleep. Society doesn’t see the frustration we experience when we constantly are questioned as to whether or not we truly have the illness we do because they can’t see it.
Our fatigue, pain, anger, sadness and grief as chronic illness patients is not available to society to allow them to compare. Our experiences with our illness are not our duty to explain to those around us to help them understand. Our ability and difficulty are not ours to share with society to justify why we simply can’t. Sometimes, we just can’t. That’s more than OK. We are not just like someone you know because you have come to the conclusion they must be the same. We are not just depressed or anxious just because you know someone who’s been that way before.
I feel like we spend all this time feeling “stuck” because we want to be able to educate individuals as to why we can’t constantly come out for breakfast after work or why we simply just can’t go for a walk in the evening. We desperately want to have someone understand so we don’t constantly have to explain our illnesses are real and require so much work. But in reality, the only people we truly owe that to is ourselves.
So, the next time you have to experience a comparison, stop and ask yourself, “Is this what I feel like spending a spoon on?” Is it something you absolutely need to do? Because ultimately, yes EDS can be isolating, but is it worth surrounding yourself with people who make you feel isolated? Are we required to consistently open our vulnerable side to people who don’t deserve to know who we are beyond our illnesses? I challenge you to educate, but not to exacerbate yourself to the point you’re in agony because of it. Ehlers Danlos Syndrome is challenging enough, let’s not make it more difficult.
One definitive thing I can tell you: I understand and I’ve got your back.
Getty image by Koldunov