Welcome to my house…
I live with my momma, I moved back home so I could save to buy a house. Shortly after I moved in, she got ill and I became her carer. I will eventually buy my house and move back out, before that happens though, we will make sure she can cope without me (plus I most likely won’t move far, so I can always be on hand if she needs me).
My house is full of invisible illnesses. My depression, anxiety and panic attacks. Then my momma, she has been diagnosed with fibromyalgia and undifferentiated connective tissue disease. Along with those are other illnesses that go hand in hand with them, one of which is depression (because we didn’t have enough of that in the house with just me).
I feel that these things have opened my eyes so much. Especially the last few months as I have been on my recovery journey. There is so much uncertainty and a lack of education about invisible illnesses. If I had £1 for every time someone said to my mum or me “but you don’t look ill” I’d be much closer to buying my house! It’s almost like people expect you to prove how ill you are, people don’t believe what they can’t see.
That’s the funny thing about invisible illnesses… they are INVISIBLE. It’s only over the last few months that I mostly don’t hide my depression, I tell people I feel anxious or if I’m having a panic attack and need to leave. It’s helped me to gain understanding from people – not all people but most. I am also very open about my mum’s illness. Some days she looks fine, that’s where the “but you don’t look ill” statement comes in. She will always be in pain though, some days she can cope with it better, other days the pain is too much and she can’t get out of bed.
My mum doesn’t talk too much about her illness, people want to believe that she is better so on the lower pain days, she lets them think that. I know my mum better than anyone though, that happens when you live and care for someone. I can hear the pain in her voice or see it in her eyes, she doesn’t need to tell me how bad it is, I already know.
Between me and my mum, plus other members of my family with depression, I’ve learnt a lot. I have learned the age old saying of “don’t judge a book by it’s cover”. To the outside world we may seem anti social or unreliable at times. Our illnesses are as unpredictable as they are invisible, so we make loose plans knowing that we may cancel last minute. I’ve learnt to be less judgemental and to be kind, you never know what battle someone is fighting. I’ve learnt how important self care is. I’ve learnt that sometimes the things people take for granted are the most important. I’ve learnt to be grateful for every good day. I am so grateful for the days that my mum is in less pain. I am grateful for the days when neither of us are sad or anxious and we can enjoy it. I am grateful for all the people that understand and support us or anyone with an invisible illness.
The biggest thing that has helped me, is being open about my struggle. I tell my mum all the time, how can we expect those people who don’t have it to understand if we don’t tell them? I would never wish our struggles on anyone, battling your own body and mind every day sucks. I do wish that more people would understand though. I don’t tell people for sympathy, or even for them to try and fix it. I tell people because the more people understand, maybe the kinder people will be to others. Maybe those with invisible illnesses won’t always be questioned and feel like they need to hide to be normal. Maybe people will realise, there is no normal, no perfect. Maybe people will realise that with a little understanding, they could bring light to an otherwise dark day.
*** A note to my beautiful momma:
I asked your permission before I posted this and you read it for me first. You told me how grateful you are for me and what I do for you, you also told me how guilty you feel that I ‘have to’ look after you.
I will tell you here what I always tell you – I love you, you gave me life. You helped make me the person I am today. You are my rock and I am yours. We are a team and no matter how much I ‘have to’ care for you, I could never EVER repay you for everything you have ever given to me.