From Our Readers
September 30, 2014 2:27 pm

Having a period of remission when you’re chronically unwell is an incredibly surreal experience, because it conflicts with everything you’ve taught yourself and everything you’ve learned throughout the duration of your illness. It’s very unsettling, in a way, because it calls for a total readjustment of your routine and it raises a lot of questions about the way you live your life, about what you can and can’t do, and about how you should and shouldn’t behave.

The adjustment in your behavior is also met with a fear of misunderstanding from your peers — if they know you as the bed-bound, or house-bound person, how are they going to react upon seeing you in this different capacity? On top of dealing with your newfound and unfamiliar sense of health, you have to struggle with how others perceive you, or how you imagine they perceive you. I think one thing a lot of people don’t realize about the experience of being chronically unwell is that it’s accompanied by a constant guilt over the effect it has on the people around you and a constant fear of judgment. Often you have to choose to present yourself as either ‘the sick person’ or ‘the healthy person’ because it feels as though people can’t comprehend the idea that health is a fluid concept susceptible to rapid change.

Whether or not you’re consciously aware of it, external presentation is a big factor that you often have to consider when you’re unwell because it so heavily impacts how you’re treated by people. On the one hand, the lack of compassion and understanding often shown by governments and medical practitioners means that you have to seriously fight to be heard and to be provided for adequately; you have to present yourself as ‘the sick person,’ the desperate invalid, just to be able to receive the support you need. You’re made to jump through hoops to prove, unequivocally, the full extent of the impact of your illness, just to satisfy their definition of ‘sick’.

On the other hand, however, you don’t want to be perceived as ‘the sick person’ by the people around you—your peers, family, coworkers, friends—because our society seems to have somehow adopted this terrible mindset that to be sick is to be weak or incapable or unworthy, even. It’s a terrifying sensation to be known as ‘the sick person’ to the people closest to you, because their perception of you changes whether they’re aware of it or not. You’re often only thought of in relation to your illness, and while you truly appreciate people’s concern, sometimes, just for the sake of your sanity, you need them to remember that you are a person outside of your illness, that you’re just you.

You’re the person who adores dogs, who cries over Disney films, who has a serious tea addiction, who hates parsley, who feels happiest when it’s pouring rain, who secretly loves Celine Dion, who buys too many T-shirts and who plays music too loudly. You’re this whole, entire person who is completely separate from your health, and your identity does not revolve around your illness. You want people to understand that sometimes, however briefly, you need the opportunity to forget that you’re unwell—to forget about the drugs and the walking stick and the wheelchair and the oxygen concentrator and the doctors and the hospitals and the blood tests and the x-rays and the medical forms—and to simply enjoy whatever it is you’re doing in your present moment. You need people to understand that life can’t always be about being sick, because to focus on it constantly is utterly exhausting and, seriously, who has the time?

So, what do you do when your health is in remission, even if only for a small amount of time? You could continue to present yourself as ‘the sick person’, but denying yourself the opportunity to relish your sudden improved quality of life seems ludicrous. The issue is, you have to re-learn how to be ‘the healthy person.’ You have to discover what your new limits are, you have to explain to people that you are suddenly ‘the not-so-sick person,’ you have to learn how to give your life meaning and how to gain a sense of purpose. You have to constantly question yourself and you have to separate yourself from the ‘sick person’ label. It’s both a terrifying and liberating experience.

The thing about being unwell is that it’s a constant balancing act and it creates an ongoing and everlasting internal conflict. You’re always battling with yourself over what you can and can’t do, and you’re always trying to push yourself to do one thing or another. Nothing is ever an easy decision, largely because of the unpredictable nature of illness and largely because the unfairness of your situation is so incredibly blatant. Being forced into a life of ill health is a huge, unwelcome burden and so you never really stop imagining yourself as someone who is capable of doing everything you want to do; you never completely resign yourself to being sick.

I think, ultimately, you have to remind yourself that regardless of whether you’re having a better day or week or month, you are still unwell, you still have to make allowances for your health and you still have limits. You’re allowed to look after yourself, you’re allowed to say no and you’re allowed to be kind to yourself. Periods of remission don’t belittle your experience of being unwell, they don’t detract from the countless days you’ve spent coping with symptoms, and they don’t mean that you’re suddenly expected to be able to do everything a healthy person can do. The best course of action to take when you’re feeling better, even if it’s fleeting, is simply to enjoy it. Don’t burden yourself with the idea that you’re suddenly obligated to keep up with ‘the healthy people.’ Just do what you want to do, what you feel able to do, and allow yourself to enjoy this small piece of respite.

Josie Eldred is a 23-year-old photographer from Australia fumbling through life, making the occasional accidental joke, and slowly building a collection of useless trivia. She has a slight obsession with comic books, a love of animals, a passion for good music, a very well-used PS3, and a somewhat superfluous collection of DVDs. She’s been sick for the past 10 years with ME/CFS and has subsequently spent a lot of that time writing about the experience of being ill, as well as exploring the world with her camera whenever possible. 

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