The Unexpected Camaraderie of Chronic Illness

August 8, 2010

I joined a club when I got sick. Actually, I joined a few. The Mixed Connective Tissue Disease club. The auto-immune disorder organisation. The chronic illness group. And every day I speak with someone about my illness or every time I post a new blog entry, these clubs grow.

Some of the club members I never meet, it’s all over Facebook pages and groups and through this site. Others are people I have known for years but didn’t realise they have been members for a while and we just never spoke of it.

The ones that suck that most are those new members, newer than me, that have only just discovered they are sick and I see them going through the same phases and thought processes as I did. And I feel helpless.

But there is a definite camaraderie between those of us who know what it’s like to be sick, or even those people who have a close friend or family member with an auto-immune disorder. We connect, we share and we understand as best we can.

It’s almost funny how we can feel a connection with people over an illness that may fall under the ‘auto-immune’ heading, because there are just so many of them and so many millions of people dealing with these illnesses. Some of them might be similar like lupus or Rheumatoid Arthritis are for me, others might be far removed from my experience but somehow we share an understanding.

Our illnesses all differ but knowing we’re in the club together is reassuring. We don’t have meetings, we don’t have a clubhouse and there is no president, but in our own lives, when we feel completely alone, in pain and isolated, we find comfort in knowing that others out there understand.

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2 Responses to “The Unexpected Camaraderie of Chronic Illness”

  1. Bev said

    Hey there Naomi – I’m glad you’ve found heapsa people out there, with the same or similar issues, as sometimes, a problem shared, is indeed halved? (Although, I’m not glad that there are heaps of people out there including yourself, with this sh*t to deal with?). And, it also helps with “perspectivisation” [is that a word?? :o)]for yourself, and for others too – two-way street. But, I have to comment, that it is an example of how little is known within the wider community of the actual myriad of the varying autoimmune disorders, and, in reality, they are all under the same umbrella, in much the same way that there are a myriad of different cancers, yet, EVERYONE knows and is aware of ‘The BIG C’, even though the majority of cancers are treatable nowadays, and, in fact, the number of people who succumb to cancers now, are actually less than that of ‘succumbers’ to autoimmune disorders? Which also means, since everyone knows about it, that ‘The BIG C’ is an emotive topic, whereas auto-immune disorders usually bring up “blank” responses? This of course is directly due to the general lack of media interest in auto-immune disorders, and therefore, the public are generally uninformed. And, the direct result of this, besides a ‘general’ lack of understanding en masse, is that there is nowhere near enough money being directed into research? And, while I’m on my soap-box, I’d also like to rant that, if only the government looked upon this ‘myriad’ and considered the ramifications in an economic framework, in lost productivity and earning capacity of each individual whose health is compromised, not to mention the complete loss if they become a ‘succumber’, then, perhaps they might see the value in funneling more $ into research, as is currently the case regarding cancer research? This of course, is not to belittle or begrudge the current $ investment that cancer now recieves (especially since I have had an incident of’The BIG C’ myself, and both of my parents had “incidences” so, I have little doubt that my genetics are hard-wired for it?). But, I have to admit, that when I was diagnosed with it, I was far less devastated, than when I was diagnosed with the autoimmune disorder? Knowing that my body was attacking itself, left me with far greater disappointment (and then anger followed by sadness) with myself, than knowing that my immune system was depressed, and allowed some cells to reproduce and potentially threaten my being? Not sure if that’s just me, and my take on things, but, meantime, back to the necessity for more funding —— IF we gathered up ALL of the auto-immune disorders under one umbrella, then, I’m sure there would be more concern on many different levels, and, the outcome would be more funding/research? So, fingers crossed that, with things like your blogging, and, more people becoming aware, then, things will move……….. so, thanks for your time efforts and energies that you’re putting into this stuff ………… cheers and well wishes, Bev.

    • Wow Bev,

      You’ve obviously had some time to think about this, thanks so much for sharing your views. I do agree that we need more research and attention on auto-immune disorders definitely. Unfortunately, right now, life is hard enough without taking on another battle as well. So I’ll keep writing and speading the word the best way I can and maybe at some point when I have adjusted to life like this, I can do something more to help the cause.
      But let’s keep on talking and letting people know and maybe interest will grow.
      Naomi

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