Being diagnosed with a chronic disease can wreak havoc in your mind. You blame yourself, you wonder what you did so wrong to have it, you think that it’s some sort of punishment. It makes you feel so worthless and helpless sometimes, you question your own existence and if it’s even worth it anymore.
I’ve had 2 surgeries as of right now, my body seems to grow endometriosis like weeds in a garden: fast. Whenever I get hit with a flare up or some sort of pain I begin to hate myself. Why do I bother having surgery if I’m just going to end up in pain again? Why do I bother living? It’s with me until the day I die. It’s so hard explaining the mental aspect to other people.
Yes, I can have surgery and trial multiple different treatments but at the end of the day those effect me too whether it be side effects or long term damage. Back in 2014 I had an eating disorder, since then I’ve had bit of a love-hate relationship with food. When you trial different hormone medications for endometriosis, it makes your weight yo-yo. I eat the same foods and still gain weight and I hate it. I don’t even eat anything I normally wouldn’t either.
There are days when I cant handle being near anyone, I get tired easily, my pain comes and goes as it pleases. Some days, as soon as I open my eyes I can feel that it’ll be a bad day.
What really makes me angry is when people sort of mock your symptoms, either telling you it’s not that bad or they find out your symptoms and fake them. They choose when they have symptoms and that annoys me to no end. What do you gain by faking a chronic disease that me and thousands of other people actually have to live with? It really upsets me. I just don’t understand it. It’s absolutely soul crushing let me tell you!
Whenever I have a flare up my anxiety and depression sky rocket. I keep to myself, I blame myself, I stare at my phone, I’m just not happy. It also plays with the rest of my health: I have digestive issues, I have vitamin deficiencies; and because it cannot kill you it receives less empathy. I just want understanding. I want people to understand that I can’t do certain things, that I can’t keep going all day, that I do feel tired easily and I can’t help that. A bit of understanding is all I want.
The bigger the flare up the stronger my mood swings hit, influenced by my treatments too. I can’t just choose to be happy, just because it’s Christmas doesn’t mean I can tell my disease to leave me alone for a day and be happy as if there’s nothing wrong. I fucking love Christmas, I always have and I always will but sometimes those bad days fall on Christmas.
But as much as I want to say it’s all bad, it’s not. I’m lucky enough to live in a country where I can receive the correct care, where I’m able to trial different medications and treatments, I’ve learnt to really appreciate the good health days mental and physical, I’ve learnt further levels of empathy, I’ve learnt how important personal boundaries are and when to say no.
If anything, my goal for 2019 is to reinforce those barriers and not be afraid to say no and refuse to hang around people that invalidate my health.
The whole point of this post was to just touch on how sensitive your mental health can be when dealing with a chronic, incurable disease. I sometimes feel suicidal, I sometimes feel depressed, my anxiety shoots through the roof and basic social interactions derail me, sometimes I just want to sleep.
Please don’t knock down someone with a disease that you don’t understand. Don’t make people choose between you and their disease. Don’t make people feel bad for putting themselves first. Don’t force people to interact with people that don’t want to. Don’t fake and mock someone’s symptoms. Don’t be a dick.
In the last few weeks I’ve just become so exhausted. I just sort of need a break, you know? But hey! Chronic disease doesn’t know when to give you a break!
Embrace the parts of life you can, it really makes a difference. Surround yourself with people that want to build you up, not knock you down. This is important.
I do feel tough though, I went just on 9 years without a diagnosis and pushed through, I’ve worked my ass off on a nursing degree and kept going when I just wanted to curl up and die, I worked through a psychological breakdown. Whenever people have tried to knock me down I just come back swinging and that’s important. I try so hard on my bad health days to remember this, that I can live through it, but it just gets hard sometimes…..a lot of the time. Take it easy.