Onely.Org

Help! I Need Somebody! (A guest post) April 11, 2014

Copious Readers, welcome to another installment in our latest series about singles with chronic illness. Today we are pleased to introduce a guest post by our reader Bea, who ponders the meaning of “friends and family” and their role in the life of a single person with chronic illness.

 Help! I need somebody!

Ever so often I stumble over this one expression that triggers kind of an allergic reaction in me. Like a mental allergy, even though I swear I can nearly feel it physically. It makes me upset and my mind starts to go in never ending circles, consisting of negative thoughts, hopeless thoughts à la „how is this ever gonna change?“. And I stumble over this expression all the time, in conversations, magazine articles, TV shows and…in self-help books, which is the last place where I wanna be confronted with depressing thoughts, seriously.

The expression I’m talking about here is this: „getting support from your family and friends“. Which is supposed to be something good in your life, something soothing, empowering, something to rely on. Especially when you are in a crisis, like losing your job or your home or an emotional crisis or getting sick. Like so sick that it changes your life, temporarily, or in case of a chronic illness, permanently. Which in itself is an enormous challenge, because a chronic illness alters your life in so many ways. It can be compared to a grieving process, accepting changes in your body, maybe restrictions in mobility, maybe constant exhaustion, maybe chronic pain. And if this illness is something totally new in your life, there’s a lot of things that need to be said good-bye to, things that you remember you were able to do before, but now can’t anymore. The good thing is, there’s also a lot of beautiful moments during and after the grieving process and the human psyche is definitely something magical, being able to adapt, to survive and build new things.

But one thing is for sure, dealing with a chronic illness all on your own is not advisable, the one thing you absolutely need to adapt to is the fact that you need help. And not only professional help from doctors or therapists etc., but in your personal life. Which is what brings me back to this expression that I don’t like, this “family and friends” thing. What I mostly don’t like about it is the subtle distinction between the two, the meaning behind the words. Because the conventional understanding of family is a biological – or at least legally adoptive – family, meaning your parents, grandparents, siblings, aunts and uncles etc. The only way to extend this kind of family – in a conventional understanding – is, if you fall in love with somebody, then marry, maybe have kids, and by this way you build a new “family branch”.

But what if you don’t have this? What if you don’t have a family, never had one or lost it or had to cut all contact out of self respect or the will to survive? And what if you don’t have a romantic relationship either, a so-called “life partner”, and your life works quite well without one? But that’s what the “friends” part in “family and friends” is for, isn’t it? Yes, that’s what I thought, too, and I’m a big advocate for families of choice, for people building close-knit ties without a romantic or biological connection behind it. The problem is I still feel quite alone with it most of the time, with this wish of changing the status quo. And I feel even more alone in moments when I am depending on somebody’s support.

Because way too often I experience that people secretly still have this hierarchy in their head, this clear distinction between family – and – friends. And yes, I do understand that people only have a certain amount of energy, that they can’t support everybody, that they have to take care of themselves, too, after all. But it bugs me that there still seems to be this huge self-evidence of who comes first and who second. It bugs me in many ways, if for example I see friends circling their life around each new “life-partner”, no matter for how little time they’ve known this person. And it bugs me, if people don’t even question the fact that they spend their vacation always with their “loved ones”. And it bugs me, of course, to then get pity from those people, because I don’t have this kind of life, not even asking if I want or need it, pressuring me into something that I actually don’t want for myself. Honestly, I love being on my own!

But what I do need is help and support, if I like it or not. And it will become more and more in the upcoming years, since my chronic illness will result in me sitting in a wheel chair at some point. And I admit that right now, I am still in the midst of my grieving process, and maybe I am too pessimistic and bitter and single-minded at this point in my life. But, of course, what’s behind this pessimism is an unfathomable amount of worries and fears. One of those fears is that my lifestyle of choice, being a single and being without my biological family, will not be compatible with this new situation. So I guess what I need the most right now is to know that there’s more people out there who have an allergic reaction to old conventions and who don’t give up working against the status quo.

–Bea

Hi, Christina here again. If you are a single person with a chronic sickness, feel free to write to us at onely@onely.org to share your story. We are also looking for good ways to say “singles with chronic illness” with fewer syllables (“sick singles” already having been nixed as a possibility). Some of us brainstormed up Single and Surviving Sickness, Single and Sick Survivors, Single and Sick but Surviving–all of which condense to the handy acronym SaSS. But acronyms aren’t everything so we still need your help to come up with some non-tongue-twisting terminology. 

Photo credit: kr8v