A letter to a ‘loved one’ by Kirsty Turner, on understanding a Hypermobility Syndrome, such as hEDS or HSD
Dear Loved One, As I have probably mentioned to you before or you may have heard me say, I have a Hypermobility Syndrome (an HMS). I am aware that you have probably not heard of this before. I would like you to read this letter I have written, in order to help you to see how my HMS affects me and my day to day life and how it makes me feel. Firstly, I would like to explain what it is. It means that my joints are all too stretchy which can cause me to be in pain and to also cause my joints to sometimes come out of place. Because of the work my muscles need to do to keep my joints working properly, this can use up my energy and mean that I get tired a lot quicker than you or anyone else. Some days I may have a good day and others I may not be feeling so good. One day it may be one part of my body that is causing me pain and the next it could be different. Just because some of my joints come out of place, it does not mean that every time I am in pain, something is out of place. I may get tired after small things that may be easy to you and this may also cause more pain in certain joints. HMSs are 'invisible illnesses', meaning that you cannot see that anything is wrong. I do not expect you to fully understand how I feel or how it affects me as it is me going through it and not you, but all that I ask for is your support and not to judge me. I am also not looking for sympathy or pity. I only want to be treated the same as everyone else. If I need something or something is wrong and I could do with your help, I will ask and let you know how I am feeling. However, sometimes, it is hard for me to express how it makes me feel. Just because sometimes I cannot do things as easily as you, doesn’t mean that I don’t appreciate being asked to come along and join in these things. I may not always be able to, but I would like you to understand if I tell you that I don’t feel up to it that day. HMS also means that my balance is not as good as your or other peoples may be. This can cause me to fall over more which can then cause me to hurt myself more. This can be very irritating. Like any illness would with anyone, HMS can make me feel upset or angry at times and all I ask for is that you are there to support me when I need it and to understand that I still want to be treated the same as everyone else. I will make decision then as to what I am up to doing and what is best for me. This can vary from day to day. Finally, thank you for reading and I hope this will have given you an insight as to what HMS is and how it can affect me.
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