My Top Tips – Fletcher
Top Tips on Managing Ehlers Danlos
- Don’t be afraid of using mobility aids/supports
These are things that are there to help you access the world to the same advantage of everyone else. I like to wear supports to help my joints feel more stable and makes it easier to walk or write. Also things like crutches and walking sticks are helpful to help feel for secure and safe when walking.
- Ask for adjustments
Asking for adjustments to work/school are extremely helpful in managing EDS. For me, I find it helpful to ask for a break when I feel I need to so I dont over do it. You can also use mobility aids at work, or ask for extensions on school work if needed. Places should be able to offer these adjustments
- Find a hobby that you enjoy
Having a hobby can be very helpful for putting your energy into something that can make u feel more positive. I like to play guitar, drum and craft and these are things that I like to do and can do no matter what my symptoms are.
Try things like baking, gaming, writing, maybe even playing an instrument. Whatever works best for you.
- Have a support system that understands you and your condition
Having an illness/disability isn’t always simple, and it is nice to be surrounded by people who understand you. This doesn’t have to be family, but can also be friends. I have a group of close friends that understand me and my Ehlers Danlos, and who are also interested in learning more about it when needed. You aren’t alone through this.
- Some people are twats
Through your journey you are going to meet some people that don’t understand your condition but who also don’t want to learn and educate themselves. It is good to remember that this is a part of you and if they arent willing to educate themselves then they arent worth worrying about. Focus on yourself, not them.
- Stay active
When I say this I don’t mean you need to go on a marathon everyday. But it is important to keep active in ways that you can. Maybe go for a walk/roll to get some fresh air, go to a gym if that’s your thing. For me, I use a app called ‘’ which helps me create a plan for working out and keeping active whilst also in my own time and in my own home. Make sure to understand your limits, if you can’t do something one day then dont do it. Take breaks, drink plenty of water. But try and keep some level of activity. There are even some that you can do from bed if that is more accessible to you.
- Allow yourself to grieve
It sounds weird but allow yourself to be sad. This is going to be a shock in both adjusting things but also thinking about life plans. Your goal might be different to others your age but do not compare yourself. This is your journey, take it a day at a time.