Amplify Blog - Living with Chronic Illness: The Isolation You Don’t See
by QFCC Youth Advocate Caroline
I never knew how isolating chronic illness could be until I realised, I’d seen my doctors more than my friends that month. It's been three years since I was diagnosed, and somehow, my symptoms just keep piling up. If someone had told me right after I was diagnosed that I’d be thrown into a never-ending, complicated system, I would’ve laughed it off. I really thought getting a diagnosis would be like, finally figuring out the problem and fixing it. But the truth? It took six years just to get that diagnosis, and that was just the beginning.
I have Stage 4 Endometriosis and PCOS (Polycystic Ovary Syndrome), and I never realised how much of my life would revolve around just managing it. The endless doctors’ appointments, the last-minute cancelled plans, the constant worry about pain—it’s like having a second full-time job. And it’s a job that doesn’t pay, doesn’t come with breaks, and definitely doesn’t care how tired you are. Some weeks, the fatigue from simply holding down day to day life leaves me trapped in bed all weekend, trying to recover for the week ahead.
And here’s the thing: for me this whole experience is mostly invisible. From the outside, I probably look fine—like, maybe I’m just tired or having a bad day. But inside? Inside, it feels like I’m constantly fighting with my body. People don’t see the days I’m too drained to hang out, or the fear of pain that makes me cancel plans last minute. It sucks because I want to be out there, doing all the normal stuff people my age are doing. But sometimes, my body has other plans.
I thought I’d be living my best life in my twenties—going out with friends, making spontaneous plans, and just being carefree. Instead, I’m constantly calculating how much energy I have left, figuring out if I can afford to “spend” it on something fun, or if I need to save it to survive the next day. Chronic illness is a total thief like that—it steals your time, energy, and, if you let it, your sense of self.
But the hardest part? It’s the loneliness. It’s not that I don’t have friends or family who care. It’s just that chronic illness is something most people my age don’t really understand. And honestly, I don’t blame them. Before all of this, I wouldn’t have understood either. But it’s tough when people don’t really see how much effort it takes just to show up, or how much you’d give to just feel “normal” again, even if it’s just for one day.
At the same time, I’m learning to be okay with saying no. I’m learning that I don’t have to explain myself or feel guilty for putting my health first. It’s a balance, and it’s hard, but I’m figuring it out.
How Friends, Family, and Colleagues Can Help
If you know someone living with a chronic illness, there are small but meaningful ways you can help support them. While it may not be easy to fully understand their experience, your support can make a big difference:
- Be Understanding When Plans Change
Cancelled plans aren’t personal—they’re often due to a sudden flare-up or extreme fatigue. If your friend or loved one has to cancel, try not to take it to heart. Offer flexibility and let them know you’ll be there whenever they’re feeling up for it. Chronic illness often makes socialising unpredictable, so patience and understanding go a long way. - Offer Practical Help
Chronic illness can make even simple tasks overwhelming. Offering to help with errands, cooking, or even just keeping them company on days when they’re not feeling well can go a long way. Don’t wait for them to ask—people with chronic illness can be hesitant to reach out because they don’t want to feel like a burden. Even small gestures like picking up groceries or taking them to an appointment can relieve a lot of stress. - Check In Without Expectations
Sometimes, just sending a text to say, “I’m thinking of you,” without any pressure to respond, can mean the world. It’s a gentle reminder that you care, and that they don’t have to explain or apologise if they’re not up to talking. Chronic illness can be unpredictable, so checking in without making them feel guilty for not responding can make a big difference. - Be Patient and Listen
Chronic illness can be frustrating, especially when symptoms seem to change or progress. Be patient when your friend or colleague is explaining their experience. Listen without judgement or trying to offer quick fixes—sometimes, they just need to vent. Just being there to listen and offering empathy rather than solutions can be a great support. - Respect Their Boundaries
If they say they’re too tired to join an activity, or they need to take things slow, respect those limits. Pushing them to do more than they can handle could make things worse. Trust that they know their body best, and give them space when they need it. Support doesn’t always have to be active—it’s often enough to respect their needs. - Support at Work
For colleagues or managers, a supportive workplace can make all the difference. Be open to flexible working hours, offer remote work options if possible, and understand that chronic illness can come with good days and bad days. Simple accommodations, like adjusting meeting times or workloads during flare-ups, can help them stay productive without pushing their limits. Chronic illness doesn’t always show on the outside, so understanding is crucial in maintaining a healthy work environment. - Do Your Own Research
Learning about their condition shows that you care and are willing to understand their struggles. While you can’t know exactly what they’re going through, being informed helps you support them better. The more you know, the easier it will be to offer meaningful support without unintentionally causing frustration or misunderstanding.
You’re Not Alone
To anyone else out there dealing with this kind of thing—you’re not alone, even though it so often feels that way. Chronic illness may take a lot, but it doesn’t take away your strength, your will to keep going, or your ability to still find joy in the little moments when you can.