Monday, 4 May 2015

Can't Bowel Me Love

Let me begin by saying I do not, by any stretch of the imagination, profess to be an expert in matters of the heart. In fact I've made some questionable choices in the romance stakes over the years and even more mistakes in relationships. But who hasn't? It’s how we learn. But bearing that evidence in mind, please feel free to take any of the following advice with a bargain-bucket-load of salt. 
In my defence however , I would mention, that I do have over 30 years experience in liking boys, over a decade’s worth of long term romances under my belt, and 6 years’ experience (diagnosed anyway) in being in a relationship with a chronic illness (and a man obvs).  

I'm currently in an almost decade-long relationship with a man who has known me pre, and post, Crohn’s Disease. I’m not going to spend this post getting all soppy about him of course, so put your sick bags down. Suffice to say I could read every dictionary in existence from cover to cover and I'd still never find the words to describe the feeling of his hand on mine. I’m quite partial to him is all I’m saying.

Anyway. The point of this blog was to share with you what I’ve learnt in living with a chronic illness, and how it affects your relationships, romantic or otherwise. As with the diagnosis of any form of illness, there will inevitably be a shake up within your intimate circle. Whether you want there to or not. And I’m not just talking about colonoscopies here, you feel me?
When you are ill it can seem all consuming, and it usually is, but it’s important to remember its also hurting those around you. Everyone who loves you must also learn to adapt to your condition, and that can often be harder on them it is for you. It always crucial to remember the person 'loving' the sick one: the care givers, who play a vital role in helping us to lead as normal and happy lives as possible. They may not be experiencing your pain and suffering, but they may be battling their own demons in acclimatising to your changing body and mind.
That’s why there are a few important things to remember in walking the tricky, sickly tightrope with your loved ones.

1.  Don't stop talking.

The minute you begin to shy away from openly discussing your thoughts and worries is when things start to crumble. In any relationship. Curiosity at what the other is thinking breeds resentment, paranoia, and worry that it's them causing you to feel in a certain way. When most likely they are just struggling to adapt or understand what is happening to you. Inevitably it just causes general unhappiness and an overall sadness that someone you love can't bring themselves to share their fears with you. Of course this isn’t necessarily the case; there a million and one reasons why patients don’t communicate their worries with their partners, friends and/or families. Primarily not wanting to cause them what we would deem to be unnecessary pain or worry. But don’t forget it’s vital we let them make up their own minds. We can’t change or predict someone’s reaction, and we shouldn’t impound our misery but keeping it in.  

2.  Don’t lose sight of your self-worth.

Please bear in mind that to you as the patient, your life may feel as though it has changed beyond all recognition; that you have changed; but to your loved ones you are still the person they care for, only now 99% more diseased. You have a condition, and although it will undoubtedly have an impact on your life, it doesn’t have to consume you and everything in its path. It’s not me just before my period. Don’t forget who you were before you became ill, who you still are and can be, despite your condition. It’s devastating to watch someone you care for give up, so don’t be that person.
3.  Life is still going on around you.
Yes, you are unwell, and yes, it’s just awful, and yes, ME ME ME, but hold on a minute Miss Self-Pity 2015, what’s the craic with your partner? Your family? Your friends? Do they still have lives or are theirs on pause until you decide it’s time to move on from relentless discussions about your bowels? Often when patients are ill for protracted periods of time, conversation goes stale and a bit too ‘medical-ly’. Appointments, procedures, surgery, blood tests, collecting prescriptions etc, can all often feel like a full time job, but don’t forget there are people around you who have their own difficulties and maybe want to discuss them with you. Don’t obsess over your illness and don’t expect others to do the same. You’re only making it you and not merely a part of you, if you start down that road.

4. Let someone lighten the load.

Don’t play the martyr and try to do it all yourself. Don’t struggle with things to try and prove some point to yourself or others. Especially not when you’re going to use your difficulties as a stick to beat someone with later. I’ve personally found day-to-day things a lot more testing since I became ill; what with the fatigue, pain, general blue moods and other array of symptoms, it’s often hard to muster the enthusiasm to get out of bed let alone carry out all the chores ‘normal’ people do. So if you live with someone, explain how you are feeling. Make it clear you are struggling and let them take some of the burden. Discuss what you can do if it makes you feel more ‘useful’, and don’t beat yourself up over what you can’t. If you don’t have a significant other, ask for a helping hand from your family and friends when you need it, or attach tiny mops to your cat’s paws.

5.  Teach rather than preach.

Overall, talk and don’t stop talking. Communicate and trust in those you love to help. Yes, they may not understand, and that may be incredibly frustrating, but don’t expect miracles overnight. Did it take you two minutes to come to terms with having an incurable illness? Educate them where need be. If that love you they will be more than willing to learn. Don’t berate someone you love for not properly grasping the extent of your symptoms/feelings/pain when it has been explained through nothing more than a complex system of irritated sighs.

After all, it takes two baby, to make a dream come true.

Two cats that is. 

1 comment:

  1. In the eyes of my relatives I'm not the same person I was prior to diagnosis. They now see me solely in terms of my disease. Discussions with me and about me are just Crohn's this and Crohn's that as if I'm nothing more than disease-on-legs.