When you have a disease and/or get diagnosed with something rare, you immediately enter a new unknown world and stop being like ‘everyone else’ that you already know. It's kind of like you stop belonging to that which you have known all your life and now you belong to this ‘unknown’ group called ‘people with autoimmune diseases’. You hear it but don’t want to acknowledge it, you have a stereotype of what people with a disease look like and the word disease does not fit you fully; it does not sit right with what you might look like or what you are currently going through.
We compare ourselves to others as our default and part of this is driven by our need and desire to be validated, a need to know and get self-worth, and feel like we belong somewhere. With social media, this has only increased and sometimes we feel like we need to follow or be a certain way in order to get any approval. However, comparing ourselves most of the time does not do much good. It can foster a feeling of anxiety, mess with our self-esteem and make us feel like we might not be good enough or fit into a particular group or category.
I think that having a disease can sometimes increase your levels of comparing yourself to others. You are not only comparing yourself to the people without an illness and that life that you used to have but also to those that you start knowing that have the same illness or a similar illness to you. I find that I compare myself to those with other rheumatic diseases and sometimes this is not healthy. I find that you might compare yourself to others thinking about your different symptoms, the different ‘levels’ or severity of the disease, but also you might fall into a route that makes you doubt your own worthiness and validity living with a disease.
There’s a thought, a very unhealthy thought, that sometimes crosses my mind and I am not sure if others will relate and it’s: “I’m not sick enough.” I find that this thought sometimes comes when you are going through a ‘good’ period of your disease but you see others having a really rough time or others going through more severe diagnoses. This thought sometimes makes me invalidate my own disease; it makes me feel like my disease and my battle are not as important as the ones that other people are going through. At times, it makes me feel that my story is not as worth it as the one of other people going through an illness. When I’m in this headspace, my brain looks for a thousand reasons to compare myself to others and says things like: “your pain is not as bad”, “look at them not being able to go to school, while you’re in school,” “you have nothing compared to them” and many more thoughts. However, the other side of my brain says: “there’s not a threshold of pain or symptoms you need to cross for your disease to be valid” and “you don’t need to justify the severity of your pain or your suffering in order to feel validated.”
As if this was a scoring system or a game when in reality we should see it as “it just is.” It is a waste of mental energy and time to compare ourselves and doubt our self-worth just because we are not “as sick” as someone else or we “don’t look as sick” as someone else. Diseases and especially rheumatic diseases, come in a million different forms and show up in a thousand different ways. The phrase “I am not that sick or as sick” should not be a deterrent to participating in a podcast about people living with a disease, participating in research or on a survey looking for patients. Because in the end, that is your reality and it is just as valuable and as worthy as the reality of someone else. Part of this is to understand that no one with the same disease will look like you or have the exact same symptoms as you. Someone might have rougher days while someone might have easier days, but sharing your story and validating yourself regardless of where in this huge spectrum of ‘disease’ you fall in is what counts and is what can help make a change in the life of those around us.
And lastly here is a story I once heard which helps me when I find myself comparing to others and diminishing my disease. Imagine there are 2 people in the ocean and unfortunately, both of them drown. However, one drowned 10 feet underwater while the other drowned 4 feet underwater. In the end, both of them drowned and it is not that the one that drowned 10 feet underwater is more valuable or that her story is more worth sharing and telling than the one that drowned 4 feet under. They were both valuable and worth the same. No one would ever say that the girl that drowned 10 ft vs 4 ft underwater is more heroic or any more valuable than the other girl. In the same way- the fact that someone’s symptoms are more severe than yours, or someone seems to have a harder time with their disease than you do, does not take away any value from you, from your story and from your disease. You are just as worth it as anyone else. Your story deserves to be heard just as anybody else’s and your disease is by no means diminished.
I won't say to not compare yourself because it is one of the hardest things to do. However, I will say that whenever these thoughts come to mind, remind yourself that you don’t have to prove the world anything to have value; your story is as it is and it doesn’t have to be like anyone else’s to be valuable. There is no mold to fit in and even less in a world where having a disease can look 1000 different ways.