February's Topic of the Month - Relationships & Lupus (We want to hear your tips and experiences)

February's Topic of the Month - Relationships & Lupus (We want to hear your tips and experiences)

Our next 'Topic of the Month' discussion for 2017 is going to be 'Relationships & Lupus'.

A chronic illness can have a profound effect on a relationship and lupus is no exception to this. Perhaps one of the greatest issues around lupus is that often there are no visible symptoms, making it more difficult for partners to understand.

We’d really love to hear if you have any tips and experiences for forming and/or maintaining a romantic relationship when you have lupus. How did you first approach telling your partner that you have lupus? Were you diagnosed whilst in a relationship, so that you had to learn to understand the disease together? How do you keep the magic alive when you are unwell?

We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/

All submissions will be anonymised.

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  • I was diagnosed whilst married with teenage children. It is believed that I have had Lupus since my early adulthood. I had been ill for sometime, so although a shock I was somewhat relieved as I had a diagnosis. I forgot for a while that as a nurse I was treating my illness as a case study. Taking control and working through it. My husband asked to come to appointments with me, I was independent, Then he said "what do I do?". I had forgotten that he and the children had a place in this. His mother had also had RA and died early of leukemia, he had been through this before. So I had to change, to share, he needed to be included which stopped him worrying. Prior to this he had begun to distance himself, treating me as if I were ill. Honestly, I find is best, discuss worries, if something hurts physically. Adjustments have had to be made from the intimate point of view. Every ouch, crack, now makes us laugh. Ive researched, advice and help with regard to the effect of sjorgrens and the affects it has had on my personal life. I constantly worry that he did not sign up to be a carer, but what I do if the tables were turned. Love him all the same.

  • Thank you so much for sharing your experiences johare.

  • My experience was very similar in that I'd forgotten my partner needed to be a part of my recovery. I think, in part, I ***resented*** his wanting to be a part of my treatment, because as powerless as I felt, I did not want to give up any control, ANY control to ANYONE, for any reason. I fought every suggestion that he made, telling him that I did not need his help, that it made me feel like a child.

    This was compounded by the fact that my boyfriend, terrified I would die (I had organ failure to deal with) became as equally pushy about wanting to give/get me help.

    It all felt very forced and desperate for the first few months. A very grand battle of tug-o-war. Things finally improved when I decided to bring him into the fold. I would check with my doctors and find the things he'd been suggesting were told to HIM by the doctors. I had to develop a new trust in him, that he would be able to help me without CONTROLLING me.

    There is so much to say on this subject, I'm still organizing my own full post about it. But your post really rang a bell with me.

  • Thank you so much for sharing your experiences quirkytizzy. I look forward to reading your own full post in due course.

  • I totally agree. I feel that finding that balance of feeling in control and empowered in a situation that leaves you treading water and sharing with your partner who you want to both protect and get help from is difficult. When everything you know is being stripped away you don't want your partner taking control of your illness as well. But who did I turn to when I could not answer questions that were put to me, my husband. I still haven't got it right, sometimes we both have to take a break and walk away for a while. Ive told him that I understand care and concern, but please tell me, don't manage me.

  • I look forward to reading this

  • I was diagnosed with SLE over 20 years ago. At the time I was married with two grown children. My husband really didn't understand what Lupus was well nor did I. We learned quite quickly after a few years it had turned into a weekly cycle. For three to four days I will flare with a very high temp,bad migraine, aching all over so it was three days each week I would spend in bed. The remainder of the week I will be trying to build up my energy

    This has taken a tremendous toll on the relationship between my self and my husband. We try very hard to spend one day each week together it may be going out or just hanging around at home. When I developed sleep apnoea this again was so difficult it put yet another barrier between us. I wasn't sure if he could handle it to be in the same bedroom with this very noisy machine every night. It's not been easy but we again seem to have found a way. When we first get into bed we allways cuddle and kiss even if I can't do anything else. We try to have lots of cuddles everyday. This I think is keeping us closer. It would be so easy to drift apart.

    It's hard to not to be able to ill all the time. Sex seems to be very few and far between, so it's more difficult to keep up the closeness we once had.

    I now have multiple auto immune disorders. I am picking them up about two or three a year over the last five years. So my life is getting more restricted with more of my time in a lot of pain and totally exhausted.

  • Hi Sheilascrystals,

    Thank you so much for sharing your experiences with your husband. It is good to know that you are able to maintain some closeness through everything.

  • When I was married, I had no idea how ill I was, and my ex and his family - strong-work-ethic Northern folk - had it in their minds I was making it all up. There was no diagnosis and no name for what was going on with me, and even though my ex-husband could see the effects, he lost patience. I was exhausted and only had the energy to either be a mum to our autism-diagnosed son, or be a wife to my Aspergers husband, but I couldn't be both. So I chose my son. My marriage went off the rails pretty quickly and it took ages to date again as I had to devote all my energy and attention to my son.

    In retrospect, my ex admits he didn't take my illness very seriously, or the toll raising our son was taking upon me. Ironically he's a lot more involved now as a parent than he was when we were married, but he's seen how things have turned now and realises I wasn't overegging my symptoms.

    Fast forward ten years on, and the Dutchman is a completely different individual. I was honest from the outset with him about my illness - which has advanced considerably from back when I was married. He doesn't always get it, and is trying very hard to find the space between coddling me, and caring for me, just as I'm trying to find the line between being overly stubborn and independent. Communication is key, and we talk a lot about what is going on, how we're feeling, and where to go with it. I think it helps that we are both determined to try and make the best of it, but at the same time we don't try to hide the worst of it from each other.

    Keeping the spark going as it were involves a lot of communication. And opiates. I can't forget the opiates! Sometimes I just don't have the energy, and I still struggle with voicing that - lack of sexual intimacy due to my exhaustion was the main reason my ex strayed, and it's still stuck in my head I have to 'perform' - but we find other ways to be intimate, and we both have a sense of fun and goofiness and can laugh when things don't go as planned. A sense of humour goes far, I find, but communicating where we are sexually is important: he and I had this discussion today in fact, checking in as I've been feeling very tired lately, and I wanted to be sure his needs were being met. We're finding equilibrium with it and we agree we've found it for now, but that may change in a month or two.

    We've started doing once a month 'date nights' - something the Dutchman has never done much of in past relationships. And we go on 'adventures'; spur of the moment trips to the seaside, drives in the country, finding interesting landmarks and terrain in the immediate area we didn't know existed. I don't walk very well but the Dutchman is amazing at finding accessible things we can do together without needing to be prompted - he never makes me feel like my illness or bad days are an inconvenience.

    Most of all, we learn, we adapt, we grow, we communicate and we check in with each other often. I think more than anything, communication is the most important (and the most often overlooked. Look at any relationship advice site out there, where nearly every answer to every question is 'Talk to your partner'. If you have someone you can communicate with in your life, and you can do so effectively, you're a combined, unstoppable force not even this stupid illness can defeat.

  • Thank you so much for sharing both of your experiences with us Silvergilt. I'm so pleased that your new relationship is going well and that you now have someone supportive who makes an effort to understand.

  • I consider myself extremely lucky in that my lupus diagnosis did not come until nearly the three year mark of my current relationship. We were both, as it were, completely invested in the relationship by the time the ship hit the iceberg.

    I also consider myself lucky in that my partner had come to me with his own chronic illnesses years ago. He struggles with fibromyalga, spinal stenosis, and various mental health issues. Our diseases are different, but run close enough in parallel as to where he understands my daily difficulties.

    This occasionally leads to both of us being too drained to do much for the other, but being as we both count our spoons very carefully, there's a deeper acceptance of that with us.

    I am still early enough in recovery that it is rare our "spoons" match up, but we have learned to seize those rare days when they do, and to be grateful for them.

    Neither of us had even the slightest idea of what "lupus" was. It was an incredible shock, as while I'd been sick and uncommunicative for nearly a year previous, we didn't think it was something incurable, something that would require an entire lifestyle change. In a way, he says it was a relief to finally have a name for why I'd been so unable to be an eager participant in our lives (as I'd gotten to the point where I could sleep, work, and that was it.)

    In the early days, as I was continuously in and out of the hospital, it was my partner who did the research. I was not exactly warm to the idea of learning about my disease, terrified as I was, so it fell to him. There was, as I mentioned in a comment above, at first a struggle of wills, but as time went on, and we both learned about this disease, the terror began to fade.

    It took a while for me to get that - the idea that not only did **I** have to wrestle with and accept my disease, so did my partner. We both went through the stages of grief and still, sometimes, circle the wagons around the process of this "new" life we now have.

    As per "keeping the magic alive", we are still working on that. This disease and the 15 or so pills a day I'm on have completely destroyed my sex drive. In the end, this means that sometimes I have to push myself to help him, and that he has to accept that it will be some time before we return to the vigorous sex life we had before.

    I understand this is a very normal problem when one partner becomes ill, but it is still something - perhaps the only thing - that we still struggle with. But as he has his own chronic illnesses, it gives him a little more patience than other partners might have.

    As another poster said, it has also brought a little humor into our sex lives. A pop of the joints, a tough roll-over, become things to giggle at instead of despair over.

    I think the biggest change in our relationship concerning lupus was that it actually made me less of a jerk. Until my diagnosis, I did not understand why sometimes he couldn't go down the stairs or do certain chores. I would get frustrated - even angry - at him.

    Now? NOW I get it.

    As the months roll on, he has continually stepped up to the plate, doing not only chores for me (such as cooking, which is good as I loathe to cook), but also reminding me that it's okay to rest, suggesting when I might be able to push myself a little further, and never judging when I need to rest.

    I almost never use this word due to religious connotations, but I truly consider myself "blessed" to have what I have. I have a partner who understood the daily issues of my disease long before we realized I even had it.

  • Thank you so much for sharing your experiences quirkytizzy. It is really interesting to hear from somebody who also has a partner with chronic, invisible illnesses and how you support one another.

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