Friday 15 February 2019

Things they don't tell you when you have a chronic illness



I always pride myself for being "real" with my blog and in real life also. I try to be positive and always achieve the best I can with my disability, but there are definitely times where I struggle. Then I started to think of all the things they don't tell you when you have a chronic illness.
One of the most scary things about having a chronic illness can definitely be the unpredictability – you never know what each day may bring. And this can be even more scary when you have a condition like EDS. Ehlers Danlos Syndrome is connective tissue disease, causing problems with the muscles and ligaments surrounding the joints.... But there is so much more to it than that.
The abundance of symptoms and fear it causes can be overwhelming, and almost feel like it is never ending, and that is just the physical symptoms. But no one ever tells you about the emotional and practical sides of having a chronic illness.
Like the fear of not being taken seriously by a medical professional who isn’t educated in EDS. The fear of being dismissed, or not believed or undermined. The anxiety of going to your next doctors appointment because all the times you have gone before you have left in a distressed state, crying and feeling so helpless. And the dread of what will happen next time.


 Like the fear of not knowing how you will be from one day to the next. The thought of knowing that you will never be the "healthy" person that you once were. The look of concern on your loved ones faces and the fear in their eyes as they can see you deteriorate each day. The fear of unknown, yet knowing that you will never be better than you are in this moment. Being scared of the future, not knowing whether things will get better- Will I have a career? A family? Friends? Will I walk again? Will I ever be pain free again?
Then there is the depression. A condition so painful that it feels almost incurable, and just as bad as the chronic illness itself. Grieving for the "old" you, for all the things you could do but now can only dream of. Grieving for the loss of friends and family that don't believe you, or think you are exaggerating, or are simply to busy to deal with someone who "can't go out." Being in a constant state of surviving not thriving. The frustration and shame of not being able to do the things you could do so easily, and the guilt of being a burden to others. 

Being chronically ill definitely changes you. It changes your outlook, your goals and perspective on life. Sometimes this can be a good thing for some people, and it can open up a whole world that you didn't even know was there. Don't get me wrong, there are definitely days where I wish I was "normal" but then, I wouldn't have the friends that I do, the career, the opportunities, and I certainly would not have got to meet the people I have met.
Yes, there are dark times living with a chronic illness. But for all the bad times, there are many more good times ahead. You just have to find them in each day.
-Sophie
xx
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