What is a chronic illness?
A chronic illness is defined as a medical condition that is “continuing or occurring again and again for a long time” – often with no cure. Coming to terms with any medical diagnosis is challenging, no matter your age or where you’re from; having to learn new terminology and how to treat or manage the condition, feeling different in yourself whilst others around you carry on with their lives. When you’re diagnosed with a long-term condition, a chronic illness that has no cure, it’s hard to stay positive knowing that you will never be ‘cured’. But there is no reason why you can’t live your life to the full with your diagnosis!
Although you might feel it’s easier to ignore the diagnosis and try to carry on as normally as possible (I did this for years), this can actually worsen your health; whilst learning to come to terms with it and working with your body can help you live your life as best as you can with a chronic illness.
I didn’t even acknowledge that EDS was a life-long condition with no sure until my stoma surgery – 5 years after my diagnosis!
Things that helped me accept a long-term medical diagnosis
- Allow yourself to grieve
- This may sound a little odd, but with a new diagnosis and new symptoms, your body may not be the same as it was as before. It may have new limitations and fatigue more easily. You may need to pace yourself now. And that loss of ‘how your body was’ is valid.
- Talk to others
- No matter if it’s a friend, family member, counsellor, teacher or even someone else with a chronic illness. Let yourself be heard – rather than bottling up your feelings. It’s also worth talking to others so that they can try and understand (as best as they can) what’s going on and how they can support you; you are not a burden.
- Joining the chronic illness community
- Whilst we’re talking about talking to others, there so many different types of support groups out there. I love the community on instagram but there are also plenty of both face-to-face and online support groups (quite a few on Facebook!). Social media has helped bring people together so that you can connect with others who are going through similar things to you. You are not alone and you can make some great friends in the process as well.
- Understand that you’re going to have some bad days
- It happens to everyone, chronic illness or not! There may be times where you struggle to do the most simplest tasks (such as taking a shower). Sometimes you will be able to predict them (after a busy couple of days, for example) and sometimes you won’t. It’s frustrating and you’re allowed to feel that; without punishing yourself or your body in the process.
- Know that you are more than your illness
- Of course, it may be a huge part of your life. But there are so many other aspects to what make you who you are. You are still allowed to enjoy the things you love and spend time with the people you care about. Pace yourself, make sure you have a support network to help you and you can do whatever it is that you want to do.
Talk to your doctor about the best ways to manage your condition. Whether that’s pain management or ways to help your fatigue or flare ups – see what works for you. One important thing for any long-term illness is pacing yourself and your activities so you don’t get too tired and allow your body to recover after being busy (something I’m still learning to master to this day)!
Having a chronic illness does not take away your value or worth, don’t forget that.
Charlotte Amy Louise 