Chronic Coupledom.

As I’m both in a long-term relationship, and someone with a predominantly invisible illness/disability, this article raised some interesting issues I hadn’t previously considered regarding being approached by men as a woman with a visible disability. It got me thinking about my own illness-specific issues around dating and romantic relationships, and I wanted to share my own experience.

I’ve only begun one new relationship (my current partner) since becoming sick, and it wasn’t an issue then since we had been friends for a year before we got together (he knew of the existence of my spinal issues if not their severity), but my main concern in dating would be when to disclose an invisible illness to a new partner.

I certainly had ‘the talk’ with him early on – as in, you don’t know how bad this gets and if you want to back out now I won’t think less of you – and still have periodic breakdowns where, in my weaker moments, I try to get him to leave me because I worry about him being stuck as my carer for the rest of my life. I haven’t managed to discourage him so far, but I still get incredibly anxious that he doesn’t know what he’s in for, down the line; as my body deteriorates further, as money is always tight because I can’t work full-time and my medical costs are high, as having children is complicated (or maybe impossible), as I snap at him when I am exhausted and in pain and out of patience, as I get sicker and need more humiliating assistance that you don’t want from a man who sees you as sexy and desirable. As I die a few decades before him and he is left alone. As the stress of being a partner and a carer makes our relationship strained and makes him resent me for needing help, and me resent him for seeing my weakness.

Love is always terrifying. There is a vulnerability inherent in giving someone the capacity to destroy you. It seems so much more complicated now, though, with the added stresses and strains of illness, particularly at a young age where I feel like things should be easy, and we should be getting our family established and secure. Our coupled-up friends have their own stressors, obviously, but they don’t seem to have that looming spectre of future complications shadowing their relationships. Maybe it’s just in sharper focus for us, because we know the form it is likely to take, while for others, the shadow – the cancer or infidelity or infertility or death of a family member or job loss or a thousand other stressors and traumas – will be a surprise.

Maybe because we know it will be difficult, because we are prepared and braced for the struggle, we will deal with the strain better. Since we know our future together will be difficult, we bond all the tighter and can put conscious work into strengthening our resilience and our relationship, perhaps in a way that other couples our age don’t consider until they are in the middle of a challenge.

I hope so. I hope we get through it, that we’re one of the couples who manages to survive chronic illness and be made stronger by it. Whatever happens, I am so glad for this time and this support, and the patience, love, and strength of a man who can and will carry me to the bathroom or the ambulance if I need him to, and never make me feel less for having to ask 🙂


9 thoughts on “Chronic Coupledom.

  1. Fibro Feist

    I feel like these words, experiences, could have come directly out of me. I’ve been married nearly 10 years, sick for 3-4, and I still feel all of this. Thank you, thank you, thank you for writing this.

  2. rachelmeeks

    I think it’s a real blessing. What’s the point of a relationship if you’re not in it for the long haul? I got married young, and I think it’s because I was diagnosed young. Early on we examined the thoughts of hospitals, death beds, sickness and in health….we considered things most couples don’t. And we decided yes, we’re in. I think a lot of people get married without ever thinking about life down the road. Old age. Illness. Lack of a sex life during flares of chronic pain. Most people don’t really, REALLY think deep into the “no matter what happens” aspect. I hate it when I need a lot of care. But I’m thankful to be working on a relationship that I know is worth it. No messing around. It’s…refreshing. 🙂

    1. jezzybel Post author

      So true, Rachel! I think part of why my relationship has moved along so quickly is chronic illness-related too. Thanks for your thoughtful comment 🙂

  3. Reva

    Thank you for sharing this. As a single woman in her early thirties with an invisible illness, hearing that relationships can grow and survive in spite of chronic illness gives me hope.


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