Having an invisible illness brings a lot of judgement and opinions from others and a lot of time it’s negative and hurtful. Living with Depression and Chronic Fatigue is hard enough as it is without other people making me feel worse about something I cannot change.
Before my Fiancé met me, he had never met someone affected by depression and anxiety and I think it shocked him to see how much it affected me. He didn’t understand Depression and it took a while for him to get used to the condition but he made the effort to learn about it and support me as much as possible. The anxiety was hard for him to deal with because he is such an outgoing person who loves to socialise and it caused a lot of stress in the relationship but we both eventually learned how to compromise and he learned my boundaries and respected them. The Chronic Fatigue Syndrome took a long time to diagnose and frustrated him to no end because he could see how my life was so negatively being impacted and it seemed like doctors just fobbed me off, but he supported me through all of it, and he’s still supporting me even though he doesn’t understand how something you cant see can be so life changing.
Some people though aren’t as supportive and understanding, they have the impression that Depression is something I choose to live with and the Chronic Fatigue is just tiredness which I should get over. I don’t currently work, I have done in the past and I would love to again, there is nothing more fulfilling than earning money for your future. To others though, I choose not to work and am lazy, they see me sitting at home all day earning no money for my household and putting all the pressure on my Fiancé. It makes me feel ashamed and I start to doubt even myself, am I weak? am I lazy? Could I do more?
Chronic Fatigue Syndrome is hard to explain and when people just accuse me of being tired and lazy it hurts me so much because I’m 23 and if I could I would be out there in the world preparing for my future and socialising, doing all the things a young person would do. Chronic Fatigue Syndrome isn’t just feeling tired, its feeling mentally and physically exhausted. People take for granted waking up in the morning and feeling refreshed and ready for the day. When I wake up in the morning, I feel nothing but exhaustion, I’ve slept all night but it’s not helped me, it’s not refreshed me, I feel just as tired as I did when I went to bed. Then there is the constant aches in my muscles, it feels like I’ve run a marathon when all I’ve done is had a shower. My joints are stiff and my temperature all over the place, I’m sweating one minute and the next I’m freezing cold. I can’t concentrate for long, my mind feels foggy and I forget things so easily. When I sleep I have such vivid disturbing dreams that it’s surprising I sleep so much. I get up at 11am and by 3pm I need to sleep again, but I fight it because I feel so ashamed, I shouldn’t be tired because I haven’t done anything productive.
So it hurts when people think I am exaggerating or making my condition up, it hurts when people say I should be out working like everybody else because its just laziness. It hurts when I have to fight for my benefits because Chronic Fatigue and Depression are not classed as long term illnesses. I shouldn’t have to prove myself. I have two illnesses that can’t be spotted physically but it doesn’t mean I’m not really ill, it just means I have to try harder to fight.