Since starting this relationship, I’ve had to see Ichthyosis, chronic illness and visible difference in layman’s terms. From the perspective of someone who has been raised with good values and has a polite demeanour, yet never encountered such visible difference or chronic illness.
When we first started talking online, he told me he was hesitant about getting to know me because of how I looked. Perhaps I overreacted, but this did sadden me, to the point that I wrote a blog post about it – or the wider issue of not wanting to be a heroic choice out of pity. Fortunately, even after reading my words, he still wanted to meet me. And lucky for that. I’m so glad I gave him a chance and not let my perhaps unfair expectation of everyone needing to be knowledgable about visible difference and how to react cloud my judgement (of course, I still expect politeness from people when they first talk to someone who looks different…). I’ve had to lower my expectations. Not in a bad way. Until he met me, he knew nothing about ichthyosis or appearance diversity – I have to be reasonable about this. I can’t expect him to fully understand everything yet. I keep reminding myself that not everyone I meet has had an education or experience of visible difference, and why should I expect them to?
But I commend him. He’s doing an amazing job with such a high maintenance girlfriend. He asks a lot of questions, is never rude and very patient. And he’s so gentle with me. He wants to spend every moment with me, Ichthyosis and all. I ask him often, “are we real?”. He pinches me gently and says yes, we are.
One thing that I’ve noticed since being with him is that this skin condition is deceiving. While I look the same most days – and while my face looks relatively calm at the moment, there’s the painful skin that is not so obvious. Oh the pain, there’s been a few very sore weeks lately. While I say I’m sore, he might not have been able to see the difference, except perhaps in the way I walk or my need for rest. And at times I felt like he just didn’t understand that I can’t just bounce back from a day of regular activities. I need to lie down after a shower to calm the pain, I need to do nothing for a while, I’m not lazy. I didn’t want to be seen as a burden on him.
I’ve had to explain that Ichthyosis isn’t just about appearance but a physical chronic illness. My dermatology team has invited him to my next appointment so they can talk to him a little more about the medical side of Ichthyosis and also to give him hope. He’s accepted this invitation keenly. The head derm, who has been seeing me since I was six, joked that while my Dad may have approved of my boyfriend, the dermatology team will need to, too.
My boy has observed and commented on the things I take for granted – which are reasonably and understandably freakish to someone who has never encountered Ichthyosis before. There’s how hot I get. I forget unless I’m touching someone else, and that had been rare – so much skin hunger. I’m hot in two ways, he compliments me, then moves away to keep his own body cool. There’s the need to be careful with what’s on his skin. Chemicals and chilli are to be washed off before he comes near me. He’s not kissing me after eating the hottest chilli sauce on the menu. (He’s a man that likes his chilli dares…). I also eat a lot due to the rapid skin renewal, and this has been something that’s surprised him in the first couple of weeks.
And there’s my skin. I shed so much skin. Initially I would brush it off his clothes, embarrassed I’d leave my mark on him. I’d worry about the skin in my bed. I’d worry about my peeling face in the morning or how my skin would fall onto him. I’d worry about my cream and how oily it made his clothes. He’s said countless times that it doesn’t bother him. He finds my skin flakes in his pocket and smiles that he’s carrying me with him wherever he goes.
These little things my skin does I take for granted amaze him. And his acceptance of them – the aspects of the condition that so many have found yucky – amazes me. I feel so, so lucky to have found him.
He holds my hand right, pulling me closer while we are waiting to cross the road, and steering me away from those who stare. I don’t see them staring – I don’t much anymore, but I know he’s trying to stop me seeing. He looks back at those staring, angry for me. I see that. I don’t want him to be angry and I hope that one day he can shake off those stares like I can.
It’s an adjustment for both of us. This isn’t just adjusting to space, music tastes or bad habits. It is an uncompromisable adjustment. It’s adjusting to a medical reality that can often be severe, unpredictable and embarrassing for me. My Ichthyosis can be frustrating, upsetting and an inconvenience, and for so long, my skin’s nuances have been private. But we’re doing ok. I guess it’s a unique challenge like every relationship has. I’ve said to him…
On the weekend we were laughing about something. I told him to “just be normal”. And then I apologised. “Sorry, here I am telling you to be normal when I hate that term“. And I joked again that I am not normal enough. He told me to stop using that word, because I hate it. He gets it.
He has a nickname for me – born while watching The Great British Bakeoff. It’s Flakey Strudel. “I love you, my flakey strudel”, he says. And I said that as long as we have each other we will alway have heat. Cue bursts of laughter.
And that’s it. It’s about being comfortable enough to have a big laugh about my situation. Our situation. Because that’s how we will rise above that hard stuff.
These are some quick tips I’ve thought of to help your partner adjust to your chronic illness. Have you got any more?