“You have to have been through it in order to understand it”

CS-zCcaUAAA6x7a.jpg largeCan you imagine feeling extreme tiredness (fatigue). You wake up in the morning feeling as if you have never been asleep, or everything you do throughout the day is done with effort.

Can you imagine one day you are sitting watching your favourite soap on TV and you go to stand up at the break to make a cup of tea but you can’t move. You can’t feel a leg or both, or you can’t feel an arm or both to lift yourself up from the sofa.

Can you imagine having to endure chronic pain, effecting part or all of your body. You attend the GP’s surgery and they do test after test to find the root cause, and try medication after medication to relieve the pain, but you still feel it.

Can you imagine how frightening it can be to have uncontrollable seizures. For example, your body thrashing around or you dissociate from your surroundings. Unable to control what your body is doing or shout out for someone to help you.

Can you imagine the embarrassment of mid-flow a conversation you just stop because you forget what is being talked about. Or you can’t remember what you did yesterday or what you are supposed to be doing tomorrow. Or even in severe cases lose a sense of where you are or who the people are around you for short periods of time.

Can you imagine feeling pain from a limb going in to spasm which you have no control over, or a part of your body cramping in to painful positions and just sticking there. Many positions you couldn’t do yourself even if you tried.

This is just a few scenarios which people with functional symptoms may have to contend with, be it every day, every week, every now and again, or even a few years apart if they have a relapse.

Can you imagine how difficult it is to explain any of the above to a partner, or family member, or friend, or doctor, or a nurse in the A&E department. Imagine the frustration when that person shows, or says, they don’t believe them, or you are made to feel like it’s purely due to your emotional stability at the time. Dismissed through ignorance and left not knowing where to go for support and help. This unfortunately is a common occurrence as it stands today.

You don’t get it until you get it and that’s why patient support groups are an invaluable resource. A place to be among people who do understand, who can support each other, and who can suggest ways to relieve symptoms.

You have to have been through it in order to understand it BUT you don’t have to have been through it to listen, learn about the condition, and show compassion.