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RA, Sex, and An Unsympathetic Partner Is a Recipe for Disaster

My boyfriend and I live together and have been together for 10 years. Around 2020, before I was diagnosed, I noticed that my libido had become practically nonexistent. It was like someone flipped a switch inside that killed whatever part of me it was that controls sex drive. I was 48 then, and had not entered menopause yet so I didn't know what was causing the problem because I was still in love abs very much attracted to my bf, but I just never felt turned on any more, so much so that I even felt a bit nauseated at the mere thought of sex. I didn't want to hurt my boyfriend's feelings and I didn't want him to think that it was him, so I forced myself to have sex I didn't want and faked my enjoyment as I fought back tears because I felt like I imagine it must feel to be molested or raped, just without the violence. It's hard to have sex when you don't want it, but I did it for several years. In the meantime, I researched medications for low sex drive abs I asked my doctor about them. There are only two approved meds for low sex drive in women and they were about $1000. I didn't have insurance at the time and I don't think they are covered by insurance anyway. I tried taking supplements homeopathic concoctions that are supposed to help with libido. I even bought jars of olives because I heard they were aphrodisiacs. Nothing worked. Our sex life was reduced to once a week because that was so I was able to muster in the way of my feigned sexuality. On top of all this, I was always uncomfortable in my own skin, I never felt quite right, something always hurt, and somehow I gained 38# in three months with no change in diet or exercise and only eating 1 or two meals a day. My clothes no longer fit and I felt self conscious being naked and not at all sexy. Eventually the extra pounds went away all on their own, but the underlying lack of sex drive persisted.
Then I was diagnosed with lupus in 2022 by my primary care doctor and referred to a rheumatologist. But I didn't have insurance and there are no specialists at the low income health clinic so I was unable to get treatment so I just got more and more sick. My doctor did what she could to treat the accompanying high blood pressure and cholesterol, treated the shortness of breath with inhalers, put me on meds for the headaches abs antidepressant meds for anxiety and persisting depression, but the underlying cause raged on.
As I learned more about lupus, it became so clear to me that it was my autoimmune disorder that was wreaking havoc on my body and my mind. I shared this new found insight with my bf, but he was less than accepting of it. I continued to make myself have sex for another because he complained and pestered me and got an attitude and he drove me crazy with the grabbing and groping and making me feel uncomfortable. I would do it just to get it over with because it would buy me a reprieve for a few days that he wouldn't act that way. Then it would start all over again.
I finally got insurance and was able to see a rheumatologist in November of last year, who also diagnosed me with RA. I now take hydroxychloroquine and meloxicam but had to discontinue the anti depressants abs anti anxiety meds as they are contraindicated.
I have tried to talk to my bf about these autoimmune disorders abs how they affect libido, but it never ends well. I have shared articles with him about it hoping that he would get it, one of which said that about 60% of women with ai disorders have sexual dysfunction because of it. I am one of those 60%. But it's like talking to a wall. He blames me, says I don't want him anymore, says I don't love him anymore, says I am just using him. He told his friend he wished he would take me off his hands and that he was stuck with me. I know it's true that he is stuck with me because I haven't been able to work and I am unable to obtain a drivers license (unless I can come up with $5000) so I have no way to leave, but it hurt when I realized that he only cared about me when he was being laid. He said that when I "took sex off the table," I took him off the table too. I never took sex off the table, I just couldn't fake it anymore and couldn't bring myself to do it, even knowing that I would have to face the consequences but not giving it to him.
I thought that I actually started feeling more like myself again even after only a couple weeks on the new meds, but then he said that to his friend and he did a couple of other things that were really mean because he was mad at me for not giving him sex, and whatever feelings had begun to stir in my disappeared again and now I am so hurt that I don't think even the meds can fix my problem now because I am turned off mentally and emotionally in addition to physically. I have been trying to get over it but it's not going well. It's made even worse by the tone in his voice, the attitude, and the dirty looks he is always giving me. It's really hard to live with someone that is always mad at me. It is very stressful which in turn, I think is making my ai issues even worse because despite the meds, I feel progressively worse every day. I have an appointment in a week to see about getting on hormone replacement therapy to see if that will help, but there is nothing that comes in a bottle that can fix the emotional pain caused by the realization that the only person in my life doesn't really care about the rest of me other than what's between my legs after spending the last ten good years of my life with him.
I was recently found to have a structural defect in my heart that has been present since birth called aberrant right subclavian artery. It's the main artery that feeds my right arm that was supposed to branch off of another artery on the other side of my heart actually grew out of my aorta and because it's misplaced it runs behind my trachea and esophagus and compressing them, making it hard to breathe and sometimes both at the same time and making me choke. I am afraid to eat anything but soup now. Anyway, it's going to take bypass surgery to repair my heart and that is weighing heavy on my mind on top of everything else. When my bf picked me up after my appointment with the cardiologist he never even asked how it went or what they said.
Two nights ago my bf day in the same room as I looking at those escort and local hookup sites apparently looking for some white to satisfy his needs. He doesn't know that I know and I haven't said anything because what's the point? It week just lead to yet another argument and I feel end up feeling hurt again. I guess it's just better for me to be alone so that I don't have to answer to anybody or explain myself or make anyone else unhappy because of my problems, but being alone is lonely, and the thought of spending the rest of my life, and dying, all alone is not very encouraging and it's not like I have anyway of leaving here anyways with no money, transportation, or a place to go. So now I am just trying to learn how to become comfortable in my misery so I can get by from one day to the next with minimal drama and domestic disputes. I know that it's no way to live but it's not like I have a choice.

  1. Oh , my heart hurts for you and all that your dealing with, not only your autoimmune conditions but the state of your relationship and the pain and stress that has caused you these past years. It is very true that autoimmune conditions like Lupus and RA can impact your libido. You certainly aren't alone in having this experience, and even having a partner who does not understand. I hope some of our community members who have personal experience in this area can share with you here as well.

    I think in a previous post Richard might have shared this article with you, but I wanted to link it here as well, just in case, https://rheumatoidarthritis.net/living/that-thing-no-one-talks-about.

    Please try to be gentle and understanding with yourself. You can not control your libido or how you're feeling. If you haven't already, you might consider speaking with a medical professional about finding a counselor/therapist. Even with the best support, living with a chronic illness can be challenging mentally and emotionally, and, unfortunately, you have the added challenge of a partner who is not sympathetic, supportive, or understanding. One of our advocates wrote a nice article about RA and mental health that I also wanted to share with you, https://rheumatoidarthritis.net/living/dont-neglect-mental-health.

    It might not feel like it now, but there are people who are loving and supportive to their partners even when they are unable to have sex. You have value whether your libido is high, low, or anything in between.

    Please know that our community is here for you! Sending you gentle hugs. -- Warmly, Christine (Team Member)

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