Okay, so you have Lupus. Now you want to know how you manage to maintain a healthy relationship with your loved one, when you can barely manage to maintain a healthy relationship with yourself? Research findings have suggest that the divorce rate among those who are suffering with a chronic illness is a staggering 75%!!! As if losing yourself to an chronic disease isn’t bad enough, statistics are suggesting you’re also likely to lose your partner as well?!
Being engaged and having a personal experience of suffering from Lupus myself, I can completely understand these statistics and let me tell you why.
Chronic illness will shift the balance of a relationship… expectations of your partner may increase due to your inability to carry on doing tasks you usually engaged in such as household duties and your own self care. After a while you will start to feel more like a ‘patient’ whilst your partner resigns to becoming a ‘carer’ (minus the benefits of a wage…plus having to deal with a more vocal and honest patient than most!!) The more duties your partner has to take on, the greater the imbalance.
Suffering with a chronic illness myself and having a list of extensive daily demands of my partner, it’s easy for me to understand why people have fears of installing anger and resentment in their partners. Honeyyyyy, I know you’ve just worked 9-5 but please can you do the food shopping, cook me dinner, clean the house, get my pills, empty the bins and shower me?!… And no, those of you with dirty minds I don’t mean shower me in a fun or rewarding way ;)… I mean I can’t move my wrists or body to wash my hair kind of way… (we’ll get back to the fun a little bit later…) Is there any wonder why you cause them to snap or be irritable with you?
One of the things I’ve learnt living with Lupus and being in a relationship, is that you have to be completely comfortable with having no dignity. There’s no room for being self conscious when your 24 year old partner is going to be seeing you exposed in the shower on a daily basis, hairy legs and all! When your need for help with self care increases…. your self-esteem and confidence decreases. If I could ask my partner to help me with my make-up in the mornings I would, but as camp as he can be at times, he’s not a qualified beautician and I’m not sure ‘clown’ is how I wish to be identified at work!
I think as people get older they become more comfortable in their own skin and care less about what other people think of them and although my thinking is heading that way, I’m still young and living in a world of competing women for on fleek eyebrows! I DO have concerns and insecurities…Will he still love me if I’m bald on our Wedding Day? Will he still love him if steroids make me fat? Will he still love me if we have to continuously cancel to pre-arranged plans with his friends? Will he still love me if he can’t go to the football because he has to look after me when I’m sick? Of course I get scared that he’ll resent me for not being the person he fell in love with over 5 years ago, of course I’ll be paranoid that I can’t complete with that women sliding down a pole on his stag do! But one thing I’m not scared of, is having to worry about any other women loving him or admiring him more than I do, because quite frankly, his kindness allows me to have a life and he is my entire world.
Now, earlier I mentioned a certain type of fun that couples may experience together and I know you’re all dying to know… can I still have fun when living with a chronic autoimmune disease?! Of course I can… but that doesn’t mean at times it comes without great difficulty. Those of you with chronic illnesses will understand me why I say that experimenting with Karma Sutra may require you to take it easy for the next few days or book some time off work… just don’t tell your boss what your annual leave plans were!! Mostly it’s about timing and patience and taking advantage of a good day! Hell I don’t care if you’re winning on FIFA… it’s now or never!
Communication is key
It is vital that you communicate with your partner if either of you are living with a chronic illness, you need to learn to respect each others emotions and feelings no matter how difficult they may be to hear. Understand that your feelings of anger and frustration are not a reflection of the person you love but the condition they are living with. They are not their illness and they feel just as cheated by their condition as you do. Likewise your partner needs you to understand that they feel overwhelmed by their new found responsibilities. They may get things wrong but they are trying to do their very best for you and sometimes they get tired too.
You need to be surrounded by patient people who understand you have a lot going on and a lot to deal with. There’s probably going to be times were you let the people you love down and they need to be okay with that. Being accepting of someone who is placed in uncontrollable and unpredictable circumstances is the foundation for healthy relationships with someone who has Lupus. Understand that no matter what Lupus may take away from you both, it can never steal your love. That is entirely up to you.
You can both still be the couple you once were, you just need to some make adaptations to your life, be patient and kind with one an another. I truly believe that couples experiencing life changing chronic diseases at such a young age are strong than most…remember what doesn’t kill you makes you stronger! Cliché I know (sorry!!)
With that being said we will see you at the altar of August next year, please be prepared for lots of blubbering, soppy romance, terrible speech’s and LOADS love and laughter!xoxoxoxoxox
Dave – thank you for everything. ❤