14 January 2014

Ichthyosis is a big adjustment for a lover.

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...

I'm not telling you it's going to be easy, I'm telling you it's going to be worth it.

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?

♥ Communicate. Be up-front about your condition. Tell them when you're in pain,  and tell them when you're doing well.   ♥ Don't expect your new partner to know  everything about your condition straight away.  It's a learning process.   ♥ Invite them to a doctor's appointment.   ♥ Believe them when they say the aspects of  your condition that you're self conscious or  embarrassed about does not bother them.   ♥ Have a laugh, see the funny side.   ♥ Thank them when they're taking care of you.

 

16 comments:

  1. Carly, I teared up reading this. I'll have to send you a PM about my private thoughts about it, but I just want to thank you so much for this post. So much of what you experienced, I can relate to, even without ichthyosis. A lot of this can also apply to my cerebral palsy, including pain and the need to rest. Few understand it, even my own parents sometimes. You and Adam tressure each other so well. I'd say you're a lucky woman, but more so, he is a lucky man.

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    1. I was going to write my own reply to Carly but katie you have said almost exactly what I would have said except I have fibromyaglia, arthritis, insomnia, and chronic fatigue instead of ichthyosis or cerebral palsy.

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  2. I love this post so much!! It gives me hope for myself, too. :)

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  3. The thing that really seems key here is having such a supportive medical team. Sadly, not everyone with a chronic disease has that.

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  4. You guys are amazing. I love how open you're being about all this. It's an awesome step towards people understanding more and more. Thanks for that

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  5. Carly, I am so happy for you. You write with such honesty - I'm sure an inspiration to all. xx

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  6. Had heard of you Carly, but didn't expect to have the opportunity of getting to know you. Thank you for your brave, inspirational words, enlightening me about a condition that is a challenge to you and your very fine friend, every minute of every day. Wishing you both the happiness you deserve and looking forward to sharing your journey in the future.

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  7. Hi Carly, I have enjoyed watching you both "fall in luv" online, and you are living proof that disability need not keep people from achieving all their dreams. xx

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  8. Reading this as an ichthyosis mum it melts my heart to hear you speak of him this way... The way you describe him, he is not just a boyfriend, but family x

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  9. hi Carly, you inspire me so much !you boyfriend is a true gentleman and he is a gift wow you give so much hope!

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  10. You're amazing Carly and I have learnt a lot from you.

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  11. Just found your blog and thought how lovely it is that you have found the person who looks at the whole you and sees the beautiful butterfly within you (pun intended in lighthearted way). your strength within you is an inspiration to all who need to see. however hard the struggle there is a way to carry on you remind me of a friend with the same condition she has the strength to carry her head and just ignore the prejudice and misunderstanding of people who just can't see through the difference to the person inside. thankyou for reminding me of that friend, this gives me fond memories of times past

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  12. Just found your blog and thought how lovely it is that you have found the person who looks at the whole you and sees the beautiful butterfly within you (pun intended in lighthearted way). your strength within you is an inspiration to all who need to see. however hard the struggle there is a way to carry on you remind me of a friend with the same condition she has the strength to carry her head and just ignore the prejudice and misunderstanding of people who just can't see through the difference to the person inside. thankyou for reminding me of that friend, this gives me fond memories of times past

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  13. Thanks for this post it is so lovely to see you happy with a man who can see the beautiful butterfly within ( lighthearted pun intended). You have reminded me of the friend I have with the same condition as you. She is also larger than life and a true enigma with an innate understanding of the way things are but fights for the respect and understanding she deserves. She like you has found one of the people who just want to know, help, protect and respect the wonderfulness of you as a person. Thanks for giving me the opportunity to see into your life

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  14. Dear Carly..I recently became aware of your inspirational blog site and the amazing work that you do through a blogger - Vanisha A Life Unstyled. May I say that it has truly been a pleasure getting to read through your blogs. You are such a strong person. Thank you for sharing your stories. You are so lucky to have such a great man in your life. Its such a beautiful love story you 2 have. I wish you and your prince charming a beautiful and blessed life together.

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