To my fellow zebras
In this context, the term zebra is used for people who have Hypermobility Spectrum Disorder (HSD)/Hypermobile Ehlers-Danlos Syndrome (hEDS).
I don’t know who needs to hear this today but you are doing a great job.
I know that many people (myself included) with HSD/hEDS struggle to show themselves the kindness and compassion that they deserve. The aim of this blog post is to try to help you see your strength and resilience in each day. Hopefully that way you can start speaking in a kinder way to yourself.
Your body
- Well done for each day that you get through. You manage despite the constant pain levels, the fatigue that seems to invade your entire body and the brain fog that slows down your thoughts.
- The way you take each subluxation and dislocation in your stride is impressive. By the way you just grit your teeth as you relocate it yourself. Or by trekking to the hospital yet again, knowing you will have to explain what HSD/hEDS is (and probably have to spell it for them).
- Recognise how tough you are when you manage to laugh off walking into that doorframe/cupboard door/cabinet (again!). Especially knowing you will soon have to try to wear the newest bruise with pride.
- It shows resilience when you can smile at those unusual noises your body makes. Who knew you could so closely resemble the noise of a bowl of Rice Krispies?!
Your mind
- It takes a unique strength to continue going to healthcare appointments. Especially when you remember the unhelpful, disappointing or upsetting previous appointments. And it shows even more strength when you continue to hold out for that healthcare professional who has actually heard of HSD/hEDS and listens in detail to what is going on (they are out there I promise!).
- You know your body so intricately in a way that many people do not, which although can feel overwhelming sometimes, is a pretty amazing skill to have.
- One of the hardest things of all can be seeing how amazing you are when you allow yourself to self-care. Especially when you have a flare up and allow yourself to rest, to do some gentle stretches/movements and to look after your needs. Next time you experience this, try to beat yourself up less.
- If you have to take a cocktail of medications each day, acknowledge how much you cope with. You deal with the side effects that come with it and you have fantastic organisation skills to remember to order, collect and take them regularly.
Your life
- You are incredible when you manage to leave the house to go and socialise, knowing that it will probably set you back for a few days.
- It takes a tough personality to go out for a meal, knowing you have to manage those unpleasant gastro symptoms. This might involve having to be ‘picky’ with your food choices and/or take numerous medications with you to get through the meal.
- Marvel at how much you have adapted to in your everyday life. From the little tricks you have learnt to manage daily tasks without a dislocation. To the way you pace yourself to get through the day. Or the skill of putting on a brace/splint or the clever gadgets you’ve invested in to continue doing ‘normal’ things.
- Remember every choice you make to do something to help yourself is a huge achievement. Whether that is something such as Pilates, a seated workout, physiotherapy exercises or stretching. Or something such as mindfulness, psychological therapy or relaxation. This also includes asking for help when you need it; this is a strength not a failing.
Every person living with HSD/hEDS has their own individual symptoms and battles. Some of the things above will not apply to everyone and there are plenty of things that I have missed. But I hope it goes some way to opening up your eyes to how extraordinary you are for coping with this condition.
If you are a friend, family member or colleague of someone with these conditions, please remember to help this person see how well they are doing. I hope you realise after reading this just how much they have to deal with on a day-to-day basis.
If you would like further information on HSD/hEDS, the following websites can be extremely useful: