Chronically ill friends need you to understand these important things right now
Your chronically ill friends want you to understand, no, seriously. They want you to understand. I debated writing this blog post about chronic illness for a very long time. Why? After finally diagnosed with Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) last year.
It’s been an incredibly difficult diagnosis for me to grasp and accept, and when they say you learn who your true friends are when you get ill, they are right. See, before the diagnosis, being physically fit was never an issue. I was able to be pretty active and on the go. Some days, it feels like grieving the life I once had. Especially now that most days require meticulous planning and pacing to prevent overexertion. (PEM) Sometimes I think yawning could well be a sport, and if it were, I would be a gold medal winner!! (I feel I should also have perfectly chiselled cheekbones, but again, sadly not haha!)
Getting a diagnosis of a chronic illness (there are loads by the way) isn’t just finally feeling like you haven’t been going crazy. Because believe me when I say that always being told your blood work is fine and there’s nothing wrong makes you seriously question your own mind. It’s an emotional rollercoaster that feels never-ending, and of course, you aren’t feeling any better despite being told you should be.
After a diagnosis comes learning to go through life with this new condition and understanding your boundaries and capabilities that you once never even batted an eyelid at. It feels like a loss that you have to process, much like a heartbreak or grief.
5 things someone with a chronic illness wants you to know
- We are still the same person we were before the illness. Our humour, qualities, and personality haven’t changed. We already feel like we grieve the person we once were before getting unwell, and trust me, it’s a bitter pill to swallow. Although our lives have changed dramatically, there are things we could once do with ease that are now incredibly difficult. We are still us on the inside, and for many, that is what is important to hold on to.
- We are grieving the things we could once do. As mentioned above, daily tasks and hobbies become much harder and, in some cases, distant memories. There can be a feeling of overwhelming sadness and regret for taking such simple things for granted. For me, it’s jogging. I love getting out and going for a run in nature. The last year has gotten much harder due to using all my energy, and the pacing flies completely out the window. Knowing that it is much more difficult now has made me want my old life back even more. This can have negative impacts on our mood, and that is when we need our loved ones around us more so that it can feel less isolating.
- We aren’t being unreliable; our bodies do not always cooperate. When someone with a chronic illness cancels plans, needs to leave early, etc., it isn’t because we are flaking out. Symptoms can vary from hour to hour, not because of a lack of interest but rather our bodies hit their limit. We always want to show up; the desire is always there, although the physical or mental ability is not guaranteed.
- Support doesn’t mean fixing us; it’s staying connected. Chronic illness can be incredibly isolating due to not being able to do most things we often take for granted. Support isn’t offering medical advice or solutions because life doesn’t work that way, unfortunately. The small gestures are appreciated more than people may realise. Checking in, a phone call or even just simply listening can make us feel better and remind us that we are still part of their world beyond illness.
- We may look fine, but we are struggling. This last one is incredibly important in general, beyond the illness, too. Just like mental health, it isn’t always visible, and that’s important to keep in mind. Someone may look cheerful, energetic and happy on the outside while dealing with fatigue, pain and other symptoms. Appearance doesn’t tell the whole story, so if we say we aren’t feeling good or that we’re having a hard time believing us, the kindest thing you can do is believe us.
Illness doesn’t change the person you once were, and it is okay to have feelings of grief for the lifestyle you once had. Be gentle on yourself and be gentle on your friends who have a chronic illness. They need that more now than ever. x