In sickness and in health
“Until chronic illness do us apart”
The acknowledgement of a chronic illness is a long process, it takes different stages and different mindsets to go through before you accept it. You get used to seeing your body changing, your strength diminishing or your mood swinging, sometimes you experience symptoms you can't even comprehend and can't even explain but you have to learn to deal with it one way or another. But how does it feel for the person that is sharing your life? Do they have to accept you are not the same person anymore? That you are tired all the time? That you don't want to have sex? That you are grumpy? That they have to cook for you when you cant? Carry you when you can't even walk? Is love strong enough for you to accept the high and lows of pain and face all the challenges that chronic illness bring?
"Hey, I have just met you, this is crazy...but here is the story of my auto-immune disease"
It is definitely not the sexiest discussion to have, but when you have to explain to your new love interest that you look good but you are suffering a lot inside. You might be OK now but one day they might ask you to go out on a Saturday night and you will have to decline the offer to stay in bed with some codeine and a hot pack. The thing is we all have our invisible issues, if it is not a disease, it can be a difficult childhood, family secrets, insecurities, lack of confidence and when you start sharing your story and opening your heart, you are actually opening a door for the other person to share their story with you as well. And that's magic!
And for those who start recommending a list of doctors, it is not that bad thing, they are just trying to help! In a very annoying way but I promise they are! It might get better after they research your disease on google. And the effort of trying to understand what you are living is a sign of interest in you.
"You are not the same person anymore"
No I am not. I am a disease fighter and a wellness lover. I get up in the morning even when I feel like I just had a car accident. I avoid gluten not because it is fashionable but because it makes me hurt less. I became a master at hiding my pain so people do not feel uneasy around me. So of course, I will never be the same person anymore.
For some of us, the diagnosis of having a chronic illness took place while they were in a relationship and you might have learned to pronounce Ankylosing Spondyloarthritis together and went on a doctor marathon together to find a hopeless cure. An indestructible bond gets built, but once the diagnosis has been accepted and pain had become part of the routine, it is not very easy on the couple life. Some pills destroy your libido, your body hurts so much that just the idea of having sex is exhausting. There is nothing worse than seeing the person you love suffering. They might go on a mission to try to find a cause or a miracle cure. Diagnosis are often followed by drastic lifestyle changes and your partner too might have to go through an acceptance phase. You just have to go with the flow but it is important sometimes to acknowledge the people you were before and saving a bit of your energy (spoons) to treat them to something you used to do together. It should avoid a lot of blame and guilt down the line.
"No I am not pissed off at you it is just the pain"
After you spent a day at work putting a brave face on and overused your superpower to keep your invisible illness invisible, you finally come home and you need to unleash the beast.
It fucking hurts! You want to lie on the floor and wish your mum was here to cook you soup and put you in bed. Except your partner is not your mum and they may not even know how to cook! But if I cannot help myself, who will? Even if your partner is aware of your chronic illness, they still go to work and they also might to be tired. That's when organization becomes handy! You need to create an emergency flare-up plan! So your partner knows why you are screaming at them and what they can do for you! And remember to be grateful...when you feel better :)
"But you don't understand"
No they probably don't but I prefer them to not understand than going through what I am going.
"Just do it"
How can you explain to someone that you would really like to pop the lid on the salt and pepper but you would rather endure watching Sharknado three times in a row than going through this pain. Asking someone to be your arms and legs might be too much but it is sometimes a necessity. Apart from very long talks, there is no other way to make someone understand that you are not blandly using them. I get so impatient when I am in pain, I get very frustrated to not be able to do what I would usually, I cannot be myself and I feel lessened to be dependent on someone's presence but remember that asking for help does not make you weak, it makes you brave! It is also a hard lesson to lessen your expectations, no one is going to do you better than you!
"Can we go live on a farm in the middle of nowhere?"
Pretty random. But am I the only one that sometimes wishes to live far from the city in a very quiet house with no one around? There will be no noise, no cars, no neighbors, no explanation to give and cheap organic veggies. Yes, pain makes me very sensitive to light, noise and bullshit. It is very delicate to explain to your loved ones that you do not really want them to listen to music and that if they could close all the blinds of the house, it will also be better. I have not found a solution for that one yet! Except if I live like a recluse for the rest of my life, I might have to make some compromises. So get your earplugs and eye mask on and embrace that amazing surroundings awareness your disease gave you!
“Today you are you. That is truer than true. There is no one alive that is youer than you.”
