What I've Learned About Managing a Long-Term Health Condition
It can be upsetting to find out that it’s going to take a long time to recover, especially when there is the potential that you could be living with these symptoms for the rest of your life. It’s not like a broken bone where in six weeks you will be repaired. For me, my illness is invisible. I look like a normal teenager who likes going out with her friends, playing sports and going to school. I look completely healthy. I think that’s what makes it so hard sometimes. I don’t have a cast people can sign, so in the past I have been asked if I’m making the pain up.
Luckily, my doctors never gave up on me. It was four years before I got a diagnosis. I had test after test, procedure after procedure, yet they never could find out what was wrong. I had so many symptoms but nothing showed up. I was a “medical mystery.” I was reassured by the fact that medical professionals believed me.
Sometimes I struggled to get through daily activities because I end up exhausted and in agony with swollen joints and my body just gives up, meaning I can’t move. In general, with lots of practice and pacing, I am able to manage my symptoms so it rarely gets to this. It can be hard. Having to wake and make sure I’ve eaten before I take my medicine, even when I’m in so much pain I don’t want to eat because I feel sick. Having to be on constant alert. “Am I going to pass out?” “Is my blood circulating to the whole of my body?” My condition tires me out, yet I want to carry on with everything I do because I am scared of being labeled as “different.”
As time goes on, you start to be able to manage and recognize your symptoms. This time last year I was fainting six times a day, whereas now I haven’t fainted in five months. I listen to the warning signs my body gives me. I think this is important for anyone, chronic condition or not. If you’re tired, take a break. Your body will thank you.
Get support from family and friends. You cannot face this alone. Just small reminders of how well you are doing, reminding you to take your medicine, visiting you in the hospital. These can all make a difference. Facing the pain should not make you feel alone. My family and friends make me smile, support me and tell me how proud they are.
Talk to people. I try and tell people how I’m feeling. It helps them understand if I can’t do something. Telling the doctors exactly how you feel is also important to ensure they are able to get the full picture.
Look to the future. One of my biggest motivations has always been to get to university. This has meant that even when I don’t feel like it, I have attended school. Even if the future is just tomorrow, I set a goal of getting up, going out with friends and getting through the day.
It is so hard living with illness, short-term or long-term. Everyone has different experiences, but it can be possible to carry on with normal activities, and I have always tried to do so.
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Thinkstock photo via brickrena.