So I’ve seen a post doing the rounds in the chronic illness community that starts with the quote ‘at least it’s not cancer’. And my goodness I am so glad that I don’t have cancer. But this post expresses some of the struggles we have, with invisible illnesses, with little understood illnesses, with illnesses that have no cure or fail to achieve symptomatic relief with medications or treatments.
One of the things that’s been on my mind recently is not only do the ‘able bodied’ - I say this in quotation marks as I personally do not see myself as disabled but I also don’t see myself as a normal person my age due to the restrictions put on my life through my illness but that is beside the point - but also doctors, professionals, even in some cases ‘specialists’ (a few of you will know personally some of whom I mean but I will not mention them by name as whatever illness whatever hospital I’m sure many other people with the same illnesses as me and others will have experienced the same) fail to comprehend our symptoms, or why certain treatments aren’t working or that although they can’t fix the problem doing nothing to avoid making things worse isn’t viable either as your quality of life is non existent. They can’t comprehend that people want to be able to work, want to be able to live independently, fall in love, get married, have a family or a dog or whatever their dream is. It is not the professionals fault we are ill, I agree - but it’s not our fault either. So ultimately why should we have to live a lesser version of ourselves?
See that’s one thing that cancer has - everyone (doctors and peers alike) automatically understands how scary it is, how overwhelming, how it makes you question everything, and also when they don’t have any better treatments they always do everything they can to offer symptomatic relief - that’s literally the role of palliative care, to make you as comfortable as you can be. They don’t expect you to always put on a brave face.
#ChronicIllness #Weneedawareness #TPN #TubeFeeding #EDSAwareness #Gastroparesis #LivingWithPOTS #Functionalgutdisorder #Changingperceptions #EDUCATE