This week I’m back with an important topic: Chronic illnesses.
I know I write a lot about both mental and physical health, but I’m doing it again because I truly believe you can never talk about it enough.
Back in February I went to a specialist clinic in Warsaw, where the doctor told me I had Endometriosis. I have 4 cysts surrounding, and crushing, my left ovary and she also said that I may find it difficult to get pregnant if I wait too long (okay, I know everyone has their own story about illnesses and fertility so no harsh comments please, I’m allowed to be worried about this.)
The reason I haven’t been blogging much this year is because, in all honesty, I’m absolutely exhausted. I’m stressed about finding a decent doctor (still searching) or treatments (still waiting) or anything that will help me live a more normal, less painful life (still looking).
I’ve wanted to have children since I was about 18 and even as a child I knew I wanted to be a mum. Of course, it hasn’t happened because it was never the right time / person / etc but now, more than ever, it’s all I can think about.
Over the last 4 months I’ve spent a lot of time researching Endometriosis and along the way I’ve joined support groups and found a huge number of people online who advocate for illnesses and also mental health (surprise, surprise, physical and mental health are related once again!). I’ve been reading, learning and asking about different chronic illnesses, the symptoms, the effects and how people cope on a daily basis.
It’s safe to say that chronic illnesses can be ugly. They can change your entire life around through pain, nausea, insomnia, lack of energy, mood loss, weight gain and loss, and so many more things.
The worst part of it is that most people won’t understand an ounce of what you’re going through and even when you do, they’re usually on the other side of the world via Instagram, certainly won’t be able to bring you a hot water bottle or accompany you to Drs visits.
I’m constantly being asked, “Are you better yet?”
Well, it’s a chronic illness so, no.
There are instagrammers and influencers who highlight how it is possible to live a normal(ish) life with a chronic illness. How they can go to the gym, raise a family, wear make up every day, etc, etc. That’s truly amazing. It’s wonderful to see such positivity and determination in them and most of us only wish we had that strength too. However, it isn’t that simple.
Imagine being awake all night in pain. Pain bolting through your chest, your back, your pelvis. You can’t stop it. No amount of paracetemol or hot water bottles will make it stop for even a minute. You’re exhausted but in too much pain to sleep. You’re crying, shaking, throwing up. You’re worrying about how many hours it’ll be until your work alarm goes off. You realise you might get 2 hours, if you’re lucky.
How are you going to function?
Well, let’s face it. You’re not going to function. Not on two hours of sleep. Not if you only got 3 hours the night before, and 5 the night before that. The lack of sleep catches up with you fairly quickly and before you know it you’re even more wiped out than you were before. You’re worried about missing work, which stops you relaxing or grabbing any moment of sleep you can. You’re worried your boss will fire you, your colleagues will laugh at you, your parents will give up on you. Worry becomes a part of you that you can’t escape.
So, what’s the solution?
Well that’s what I’m trying to work out.
So far I’ve realised that being on the pill makes my daily life a little bit worse, but stops me having 5-10 days of a period from somewhere far beyond hell. I have to choose between three weeks of fairly normal living and one week of hell. Or no weeks of hell but continuous discomfort, nausea and heightened anxiety.
What would you choose?
Another really important factor here is your employer. I’ve worked for people before who, despite knowing I was a student, used to get arse-y with me if I needed a week day off before a deadline, or couldn’t cover a shift or take overtime because I was busy with University work. I’ve had senior management make snide comments or talk about me behind my back, to people who then came and told me, about me being ill.
I’ve had people, who apparently know what Endometriosis is, tell me that I shouldn’t be that ill or in that much pain, which is utter bullshit because Endo is one of the most painful conditions you can suffer from (20 women describe the pain of Endometriosis over on Hello Giggles).
Whereas my current employer and the management team are absolutely amazing. Last month I barely worked more than 10 days in the month and not once did anyone say anything unkind, or hint that I should find a new job. Neither did my colleagues either. They were so supportive. It made me feel extremely guilty that I kept calling in sick but when I went back in they were great and I knew that I’d found the right place to work.
This month I’ve worked 2 full weeks and one half a week. I’m starting to feel a little better and I’m not in pain as often as I was last month. This works out nicely for everyone because I still have a job and my employers don’t have to replace me. Although I do still worry that they might, but that’s come from within my own mind and not because they’ve said anything.
Do you suffer from a chronic illness? Do you work?
If so, how do your employers respond to you needing time off for appointments or calling in sick?
I’d love for more people to share their stories.