One of the reasons we started our blog was to spread awareness of invisible/chronic illnesses and to debunk some of the misconceptions of the chronic illnesses community. These chronic illness misconceptions are still something we personally battle with – people jumping to conclusions based on the fact that we don’t “look sick” or making wildly incorrect assumptions about our diagnosis and/or lifestyle. This is extremely frustrating and upsetting at times (it’s hard for it not to get to us) but we know how important it is to advocate for ourselves and spread the correct information. With this in mind, we put together a list of the top 10 misconceptions that we hear:
1. You need to look a certain way to be “sick”
We hear all the time “you don’t look sick”, but what does “looking sick” even mean?! There are SO many different types of chronic illnesses and SO many invisible Illnesses. You don’t need to physically see a disability or diagnosis for it to be there and be present. This is a big misconception that we’re tired of fighting against. Chronic illnesses can affect any person at any age and can present in a zillion different ways, shapes and forms. So don’t just assume!
2. You’re faking it for attention
Just no. We don’t know anyone in the chronic illness community who gains favorable attention from having an illness or ailment. We love the positive advocacy that we have been able to achieve because of our diagnosis, but no one should assume someone is faking their illness for attention, good or bad.
3. It must be nice to lay in bed all day
This one always makes us laugh because as anyone who has been bed-bound knows, no it’s not enjoyable to be stuck in bed. It’s frustrating, it’s annoying and it doesn’t make you feel great to be unable to do anything. Being unable to get out of bed is not a fun staycation where you’re playing hookie from work and indulging in the day.
4. You’re picking and choosing when to be sick / using it as an inconvenience
Our autoimmune and autonomic issues come with a lot of unpredictability. Our symptoms can fluctuate greatly from day to day and can sometimes depend on outside factors (i.e. temperature, sleep, eating and how much activity we’ve recently done) but some days we wake up feeling bad for no good reason and it’s simply out of our control. We don’t pick and choose when we feel good or when we feel bad – we wish we had that ability because making plans would be so much easier and cause us so much less anxiety.
5. It can’t be that bad
Ya it can be “that bad”, but we don’t have any other option. People in the chronic illnesses community are tough and are warriors. For us personally if we mention it, then we’re really not feeling well. If we talked about every single time we felt sick or had a negative symptom we would never stop talking!
6. You could push yourself if you wanted to
The only one who knows how much to push yourself is YOU. Pushing yourself too much or overdoing it can be detrimental and can cause bad flare ups. Unless you’re the patient and the one going through it – zip it!
7. You can’t be productive or successful
We might need to work different hours or need certain adjustments or modifications to help our conditions, but we can be just as productive/successful as our peers. We can all be contributing members of society – just in different ways!
8. You do nothing all day/you’re lazy
*Cue eye roll. No one chooses a chronic illness or chooses to be sick. Putting your health first and living with a chronic illness doesn’t make you lazy in the least bit. If anything, we’d say that having a chronic illness is HARD and requires constant maintenance. For us, keeping our health as “normalized” as it can be is an all day/everyday process. Having to rest is a necessity, it’s not a luxury and it’s not lazy.
9. You’re sick because of certain lifestyle choices
Our lifestyle choices didn’t cause or contribute to us having our chronic illnesses. We both have autoimmune and autonomic problems and they’re all genetic. While changing diet and other adaptations can help our symptoms, nothing we did or didn’t do caused us to be sick! We just hit a genetic lottery 🙂
10. Having a chronic illness makes you a burden
This is something we’ve definitely felt from time to time and is something we see/hear from other posts and from other people. It is a misconception that we have about ourselves which also couldn’t be further from the truth. We have to stop when we go down that train of thought and rewire our brain because no one with a chronic illness is a burden. It’s the hand we’re dealt, but everyone at some point or another has to deal with hard stuff in life. We can all love and be loved – we can all help each other in different capacities.
Let us know if we missed a chronic illness misconception that you’re also tired of hearing in the comments!