Living with an Invisible Illness?
From the moment I was told by my GP that I may have endometriosis I was straight on the internet and advice forums. One of the most commonly used phrases I found was "living with an invisible illness". When I first read this I felt like fist bumping the air and shouting YES! at the top of my voice. Suddenly I wasn't just the only one who felt like this. I had always felt like a bit of a whimp for being so rubbish that I couldn't just get on with my life during Painful monthly periods. I saw my friends and family get through it without any trouble or moaning and not having to even take paracetamol. I on the other hand was doubled over in pain, dosed up on codeine with a hot water bottle and bleeding so heavily sometimes that I couldn't move from the toilet. Why was I so different? Then the pain just carried on. It didn't matter where in my cycle I was and it was suddenly all around my abdomen, sharp and stabbing in my back and sides, even my legs were tender and painful. I was in and out of A&E at least once a month and had been diagnosed with a ridiculous amount of water/kidney infections. I lived on a mix of codeine and antibiotics. I was ill all the time. This was when I started to see it. I would have to break plans with friends or family due to being ill and they would look at me and I could tell they were thinking "really?! you look fine to me" or I would get signed of work for another week after another A&E visit and my boss would comment "but you were fine yesterday" or "surely you can't be ill again? you were only off the other week". When I was finally diagnosed I was sure that this would get better. I was certain the operation had worked and that the specialists would be able to keep the pain at bay.... and for a while they did. I went on a mixture of pain relievers and injections to force me in to an early menopause and for a time this worked well, but then the pain and the bleeding started to return. Day by day things started to get worse. The injections were stopped and I tried many different birth control pills but none of them worked and many of them gave me very unpleasant side effects. I had only 2 options left to stop my bleeding, the mirena coil or the implant. I went for the mirena hoping the side effects wouldn't be as bad if the hormones were localised. This helped! it stopped the bleeding but nothing seemed to stop the pain, the fatigue and the inability to actually live my life free of this illness.
Another operation down and now i have been referred to the pain clinic to try and help. I had my first appointment this week and I have to say I'm hopeful that they can help me get this pain under my control and stop it controlling me!
So living with an invisible illness is tough! Having to explain your illness and the effects it has to every new important person in your life is hard and relentless. Having to tell your new boss or potential partners why it is you have to take things steady or take time off for hospital appointments or operations is not fun and when they look at you with that questioning stare you know that no matter what you say they will never fully believe what you are saying is true. Its hard having to constantly remind people that you are suffering from pain every minute of every day. Explaining that the pain causes you to be so tired all the time that thinking about going out or working an 8 hour shift can bring you to tears.
The problem with having an invisible illness is when people look at you they see a normal young woman who should be filled with energy and spend her nights out having fun, working hard every day to get to where she wants to go. They see a normal human being who should live every day with excitement and joy! What we actually are is someone who lives everyday a slave to our illness constantly in pain and tired from fighting it. What we have to do is give everyone we know the right education, teach them about our illness and how it impacts our lives every day. Help them understand how hard it can be and then teach them how they can help us try to live each day with excitement and joy.
Sorry its been a while since I have blogged its been a hard few weeks in a new role at work and I have let a few things slide since. I plan to blog at least once a week from today on so keep coming back for new posts.
Wishing you all a painfree week.
Another operation down and now i have been referred to the pain clinic to try and help. I had my first appointment this week and I have to say I'm hopeful that they can help me get this pain under my control and stop it controlling me!
So living with an invisible illness is tough! Having to explain your illness and the effects it has to every new important person in your life is hard and relentless. Having to tell your new boss or potential partners why it is you have to take things steady or take time off for hospital appointments or operations is not fun and when they look at you with that questioning stare you know that no matter what you say they will never fully believe what you are saying is true. Its hard having to constantly remind people that you are suffering from pain every minute of every day. Explaining that the pain causes you to be so tired all the time that thinking about going out or working an 8 hour shift can bring you to tears.
The problem with having an invisible illness is when people look at you they see a normal young woman who should be filled with energy and spend her nights out having fun, working hard every day to get to where she wants to go. They see a normal human being who should live every day with excitement and joy! What we actually are is someone who lives everyday a slave to our illness constantly in pain and tired from fighting it. What we have to do is give everyone we know the right education, teach them about our illness and how it impacts our lives every day. Help them understand how hard it can be and then teach them how they can help us try to live each day with excitement and joy.
Sorry its been a while since I have blogged its been a hard few weeks in a new role at work and I have let a few things slide since. I plan to blog at least once a week from today on so keep coming back for new posts.
Wishing you all a painfree week.
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