Chronic Illness and Family

This is a HUGE topic – one that definitely requires more than one post to discuss and one that likely requires some additional “background” information in general. I just wanted to start in on this one as well because it is something with which I am being confronted yet again in my life … and, like the issue of “Chronic Illness and Friends,” the junction where “Chronic Illness” and “Family” meet is tortuous at best; although it feels (and seems logically sensible for it to feel as if!) the people who have empirically seen you at your “worst” would “understand” “chronic illness” – and specifically YOUR chronic illness – more than others, necessarily, the people in our families are often people who do not seem to “get it” and there are many families that have been outright divided because of chronic illness. I will not get into anything “ethical” here – how “wrong” it is for family members to drop others in their family because they cannot personally deal with illness – but I do want to come back to this issue, and I do want to confront the very difficult reality that those of us with chronic illness face insofar as “feeling alone” is concerned in regard to how our illnesses are handled or mishandled by our families. I truly believe the heart of almost every problem (if not every problem) interpersonally and intrapersonally lies in the experience of being ALONE in the individual FEELING said problem. This can manifest in any number of ways – a topic to which I will also return, I promise!

At any rate, I have had many experiences over the last year dealing with my family and their general misunderstanding of “chronic illness” as a generalization. To be more specific myself, I have been challenged by the inability to define “chronic illness” in a concrete way – the way it affects people and the severity with which it affects people can both vary so dramatically that it is very literally impossible to define “chronic illness” simply. One of the members of my immediate family was diagnosed with “chronic illness” in the last couple of years and his chronic illness is very much less severe than mine (this is not putting anyone down – which is the issue I have so often faced with my family – the misunderstanding just in qualitatively and quantitatively defining the severity of one’s chronic illness vs. the chronic illness of another): this has led to a great deal of discord within the family in general. This has been particularly difficult for me because the entire family has seen how I have fought (again, very literally) for my life for the duration of my life, more or less, how I have looked death squarely in the eye time and again; this is not the case with the family member in discussion here. I have never disputed the discomfort of this person’s illness; but there is a distinct difference between a chronic illness that is systemic and has a fairly high fatality rate (without the use of a specific medication, that is – which is a medication I cannot take) and a chronic illness that affects only one specific area of a specific organ in the body. Autoimmune diseases in general (the systemic ones, that is) are terrible, terrible illnesses; I think those with severe Behçet’s do refer to their illness as “autoimmune” (although it has not been proven to be a true autoimmune disease yet – more on that to come as well, I promise!) – because it IS systemic: it is a vasculitis and therefore can and often DOES affect every part of the body. This is very different from a disease that affects only a specific part of the body. Although both are considered “chronic illnesses,” they are very different “animals.” One sees the experience my family member has had and thinks it is so awful – but to me, the duration and intensity of the experience is very much like one of the “acute” infections I have fought and eventually beaten in my life. I think family members, friends, and people in general need to put things in a more objective light in this respect – it is, in my mind, easier to “gauge” the “severity” of an illness in this way (time, severity, organs/systems involved, &c.) than it is if we let our emotions dictate what “severe” means – which is how we usually are with our family members and close friends.

At any rate! I am rambling – I hope any of that was coherent! I hope to come back to all of this and discuss it all at greater length – there are quite a few discussions wrapped up in those paragraphs – incredibly important discussions at that! I would love to hear about others’ experiences with family members who have had chronic illness that is either more or less “severe” than yours or just your experiences dealing with family members and your own chronic illness. It is a very difficult thing to deal with – especially when the person suffering (either the patient or one directly related to the patient) is a child.

Thank you very much for taking the time to read this! As always, I hope you are having a WONDERFUL day and a happy and healthy one, wherever you are in the world! Take care and be well!!

❤ Always, Beth

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