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I always thought I would find a diagnosis that would fit, that the doctors would say something and I would just simply embrace it but the truth was—the truth still is—doctors throw words around all the time.
1 - Words don't always fit.
People expect one to simply embrace their new condition but the truth was—the truth still is—doctors throw words around all the time. Once I started being diagnosed I don't know what I expected but I thought that they would find me a diagnosis and that would be the end of it. I thought that it would just fit and make me feel like I finally understood something about myself that I didn't know before. But the truth is, nothing ever truly fits bits of some conditions but one never has all the symptoms of everything. Not everything is going to click straight away—sometimes things do not click at all. There is still part of my condition that doesn't fit me but that doesn't make it any less valid.
2 - Don't Google.
Googling the condition is dangerous but something everyone does. It's something that is meant to help but it often hinders the process of understanding the condition and what it means for you or the person struggling. My Ima couldn't understand how the doctors came to the choice they did with me and Googling doesn't help. The last thing you want to hear is that your life expectancy halves only to find out you googled the wrong version of the condition!
3 - Just because you can't see it doesn't mean it's not real.
Have you ever told a cancer patient that they don't look sick? No, because you just shouldn't and most people wouldn't but I have been told by countless people (normally old) that I don't look disabled enough to have a blue badge. I was declined a straw at Nando's because it's up to them who can use them and they are "trying to save the planet."
Just because you feel good today—that's valid and allowed even if you were stuck in bed the 24 hours previous. Some people use wheelchairs every so often. That's allowed and valid. It's important not to beat yourself up over one bad day or when someone comments about you if you look able bodied.
4 - Everyone handles scary terms differently.
Even if a diagnosis is not directly affecting you but a loved one, it's still going to change your life. My condition may only affect me day to day but it affected my parents and my partner. It affects the things I can do. It's changed how I plan my life and sometimes I'm not okay with it but sometimes my parents get upset because I will not be able to walk forever and the chances are I will be wheelchair bound before I'm 30. And they are allowed to be upset. They were strong when you first started to struggle but every so often they are allowed to fluster.
5 - Find people that understand.
The internet is a big strange world and while Googling isn't recommended, a world I found was "disability Twitter," online blogs and other people that understand how I feel and sometimes their journeys were so different to mine but gave me the ability to ask other people about medication and what they are taking. Talk to the hospital—there are often support groups, which I know sound sad and like you're not really living but with anything, know one has to learn to adapt. It's okay to admit that you can't adapt alone. You can process on your own. Thinking you can is slightly dangerous and self destructive because whatever the life changing conditions are, one thing that is clear is that in someway or another it's going to change your life.