When you’re first diagnosed with a chronic illness, or even an acute one (sudden and short-lived), people flock to you with messages of support and well-wishes. They ask how you’re feeling, listen to you grumble, and offer practical help and support. But what happens when the illness doesn’t get better, and those kindly gestures and words dry up?
It’s a tale all too familiar amongst chronic illness warriors and it’s something we need to address. You see, with a chronic illness, that person has the ailment/s long-term, maybe even life-long, and whilst they might, if they’re lucky, have some periods of remission, they’re going to have a lot of ‘sick’ days. That in itself is a lot to take on. Knowing that life may never be the same again, and that pain and fatigue has moved in for the long haul, all adds to an often worsening mental state. Mental illness is a big problem amongst the sick and disabled, and it’s little wonder with poor diagnostics and treatment (oh yes, there is another blog in the pipeline about that!!) but a better awareness of what chronic illness actually means, and the impact is has on the patient is absolutely vital to helping lessen the mental load.
The problem is, we learn very quickly to stop ‘moaning’ about our health and to slap on a happy face, but beneath our mask, we just want someone to say ‘no, really, how are you?’ and to give us a hug. We don’t want to bore people with the details of our symptoms, our lack of sleep, and how every day feels like Groundhog day, because we think that if we do, those people will stop calling round and stop caring.
I have certainly found that having other chronic illness warrior friends to be a God-send. People who I can whine on and on at, they give an understanding and knowing ear, and words of comfort before launching into their own woes- and it’s GREAT! ‘Healthy’ friends and family mean well, and of course we love them, but in this case, misery does indeed love company, and that company can be a vital life-line, guarding against depression and anxiety, and other mental health issues that are so common within our community.
Being ill or disabled can carry with it a heavy loneliness that’s hard to comprehend, and watching others go out for the night at the pub, to sports events, even a full day at work, can be crushing. Just because we might spend most of our time at home and often turn down invites to go out, it doesn’t mean we’re not longing for some company and fun. So, if you’re reading this as a loved one of a someone with chronic illness, please know that they are TRYING so bad, to be upbeat and positive and not ‘all about’ their illness. Please call in on them, see if they need a hand with anything, keep inviting them out even if they say no, and remind them that you’re there for them.
Saying that though, we are still people. People with dreams, hopes, interests, hobbies and a sense of fun. Whilst it might be difficult to tap into these things, do keep them in mind. They may well have seen the sports game on tv and want to talk about it, or to engage in some crafts with you at the kitchen table, or to discuss last night’s soap cliff-hanger. Although our illness/es infliltrate pretty much all areas of our lives, we just want you to understand and acknowledge that, not treat us as if that’s all we have left. It’s a balance to strike for sure, but in at least trying, we know you haven’t given up on us.
And to you fellow chronic illness warriors, try to keep in touch with friends and family. It’s not always easy, but social connection is so important, even if it’s just a few text messages here and there. Going with the flow, and accepting your limitations will help you to organise and make the most of your usable time, and reduce the amount of frustration and sadness you feel surrounding your health. Ultimately, well people won’t understand what you’re going through, or why you don’t seem to get better, but you can still keep those important connections with them that will boost your overall mental health.
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