How do you explain to someone that actually, you won’t ever get better? This is life long and can only be managed, not cured. I’m usually a very private person. I don’t like to burden people with my problems. I don’t like people to know the reality that I will not actually get better.
How do you explain to your parents the truth about what’s going on? It was so much easier when they would attend appointments and hear everything first hand. Now it has to be explained, but I don’t really feel like talking about it. I’m not very good at talking about it. I worry they think I’m lazy and not helping out of choice. It can sometimes create friction.
More commonly than not, the focus of family/friend conversations seems to be about my health. I’m always grateful for people being interested in how I’m feeling, but it can be hard going when life seems to be consumed by medical talk. I often try to prompt other conversations so that health doesn’t have to be at the centre of everything, but it always comes back to how I’m feeling or what I’m up to.
I get upset speaking about it because the truth is, I have no idea what the future holds in terms of health. It is terrifying. I can’t answer all of the questions people have and medical professionals can’t answer the questions I have. There is no clarity on how much this is going to affect me. I can’t be reassured that everything will be okay because there’s a high chance it won’t be. Nothing is clear.
I miss chatting to my friends. I’m not really like them anymore. They’re all away at Uni living everything that I wanted. I’m always proud of them and I hope that they can still be proud of me too. Friends are happiness. I’m lucky to be in a relationship with my best friend, so I still get to have the most valuable quality time with him. These are my favourite times, but I miss the relationships and silly conversations I used to have with others.
In reality, chronic illness does act as a barrier in life and it does affect how others view you. It can be hard when illness gets in the way of friendships and experiences, but at the end of the day, people who care will always be there when you need them. For now, I have accepted that I am struggling and that’s okay. Times are tough and it’s okay not to be perfect all of the time.