Having someone go above and beyond to look after you when you’re chronically sick definitely signifies that this person is the one. Maybe not the one the one but you know what I mean – it should prove that they really care, support and love you and their acceptance with you being so poorly for some, most or all of the time is definitely a good sign.
My husband and I got together at university, the time when my symptoms were progressing quite quickly but I wasn’t thinking much about it. I remember things such as bleeding through my clothes or bedding in his presence, having bladder and bowel problems that limited what we could do at times, and when it began to interfere with the other side of our relationship.
But my husband was incredibly understanding and supportive. He was with me when we were going through the turbulence of a diagnosis and trying all sorts of different medications. He ferried me to appointment after appointment, waited at my bedside after surgery and fought every step along the way. A clear memory I have is when I was first diagnosed with Endometriosis – I told him that he didn’t have to stay with me because of the fertility problems we would face. He told me “to stop being silly” and that “of course he was going to stay with me”. Nothing seemed to phase him, and at the time I don’t think I took on board how amazing that was.
This article is not me bragging about my husband and our relationship. I want to talk about the other things, the things that people don’t always see or realise and how hard relationships are when you are chronically ill. So if you’re reading this mum and dad, it’s a totally safe article!
The hardest thing about relationships when you are chronically ill is how the roles might change. Regardless of whether you have been in a relationship for a long time or are just going through the dating process, sometimes it may seem like your partner is more like a carer than a lover and friend. I know that I’ve had these worries – my husband does so much to help me, so much more than ever before, but I don’t ever want him to feel like he is my carer. I am independent throughout daily life, but there are things he does to make the jobs easier or does for me, especially when I am in the midst of a large flare. And whilst it might be uncomfortable for some couples, communication and openness is important.
I’ve also realised what I’d be like without my husband (completely stuck, FYI) and whilst that is a bit of s frightening thought, it makes me realise just how amazing he is. And I’m not the only person who’s partner is like this – I know so many people in the chronic illness community who’s partner is their rock, the one they rely on for everything. Sometimes it takes those days when your partner is unable to help, are out or unwell themselves to make them realise how much you appreciate them.
Of course, being chronically sick will cause stresses and worries for your partner – who on earth likes to see the person they love unwell? These stresses and worries may present themselves as quiet days, moments of snappiness or even small arguments, but it’s never meant. I think sometimes we have to remember to look at the people around us – even though they aren’t going through the physical symptoms they are going through a lot of psychological symptoms themselves and they need to vent too. If you’re concerned it’s getting a bit much for your partner, or you just need some time to focus on other things, here are some tips;
- Keep talking to each other. You may find that there is one particular thing bothering your partner that can be easily sorted, or its a combination of things that might take a bit longer. Either way, keeping your relationship open and honest will help get any worries out in the open so you are able to solve them.
- Find out what helps your partner deal with these stresses. For example, my husband finds it super beneficial to attend my appointments with me because he is then able to hear first hand the reasons behind decisions such as medication, treatment or operations, as well as understand why my symptoms are as they are.
- Make sure you are not going through it just the two of you, because it’s a lot easier for things to build up than if you are able to have a good support system from other people, like parents, friends or other family members.
- Allow for alone time or doing things separately. I don’t mean taking a break necessarily, I just mean allowing for opportunities such as having a girly day with friends, going to the gym or seeing family.
- Have time away from focusing on health. I know this can be really hard, especially if your symptoms are present 24/7, but doing things like cosy nights in, going out and enjoying yourself or allocating set time to talk about health can help limit the time spent focusing on it, thus helping reduce any worries and stress
The other thing that I feel is important to mention is intimacy. Intimacy is not necessarily the most important part of a relationship, but it is a big part. If you have a condition or symptoms that mean being intimate is hard, painful or not possible, then this alone can be an area of stress. You may go through feelings of guilt for not being able to be intimate with your partner, worry about it being painful or whether your partner is still interested. It is an incredibly hard area (no pun intended!) and will impact each couple differently. I know I’ve been through this on more than on occasion – the fear that your partner might be interested in looking elsewhere, the worry about being intimate or having to stop halfway through. The other thing that has crossed my mind once or twice is how my husband feels – does he worry about hurting me? Does he feel guilty about causing me pain. However, the most important thing to say is that your partner loves you, and therefore do not be surprised at how wonderful they cope with things like this. And intimacy means something different to everyone and you can be intimate without engaging in any sexual activity.
There is no doubt that maintaining relationships when you are chronically ill is hard – and this applies to other forms of relationships such as friends, colleagues and family. There may be times when you have to cancel last minute, are unable to participate in planned activities or are off sick frequently. To be honest, I think that times like those just highlight the people that really care about you. I’ll put my hands up and say I have lost friends because of my illnesses (usually my inability to make planned events or lack of understanding) and have had numerous struggles with work.
I am certain that all of you reading this are in the most amazing and loving relationships, and if you’re new to the dating scene then I know you will find someone just as wonderful as you. Relationships, regardless of any illness, are hard – think of the number of people who divorce or break-up – being in a long-term and well-rounded relationship is a huge credit to any couple.
The most important thing in any relationship is patience, love and understanding. And if you’ve got that, then you can handle anything – chronic illness or not.