Low Libido from RA Cost Me a 10-Year Relationship
Hi everyone...I was recently diagnosed with RA. I have known something was wrong with me for about four years but didn't know what is was because I had a laundry list of random and seemingly unrelated symptoms. My primary care doctor suspected lupus because I had a positive ANA and referred me to a rheumatologist two years ago but I don't drive and was unable to find any that were taking new patients that were within my ability to travel to. I finally got in with a rheumatologist a few weeks ago and was diagnosed with RA earlier this week. That explains a lot.
So anyway, when I started feeling really bad a couple of years ago, it was like someone flipped a switch inside me and turned off my libido.. it was like I was empty inside and couldn't feel anything even though I was still very attracted to and in love with my boyfriend of ten years. It was totally out of character for me and tithe me into this nonsexual being that is nothing like my former self. I asked my doctor about these two new medications that are now available for women with low sex drive but they are like $1000 and not ccovered by insurance so they were out of the question. I tried taking these over the counter pills that are supposed to increase libido, and I tried these homeopathic supplements that were supposed to help with low sex drive. I even started eating olives all the time because supposedly they are an aphrodisiac. Nothing worked.
As I'm sure you ask know. Unchecked RA can do a lot of damage in the course of several years with no treatment. It doesn't help that my living arrangement really sucks and I am miserable every day, and that I have no money or income or even a car to go anywhere - but that's a sorry for another time, sufficent to say, I have many reasons to be depressed even if I didn't have RA.
My boyfriend broke up with me yesterday because I haven't had sex with him in a couple of months. He doesn't know it, but all the times we have had sex in the last two years I had to fake that it felt good and that I was enjoying myself because I didn't want to hurt his feelings or make him think it was him when I know it's me. But for the last couple of months I just couldn't even fake it anymore and the last time we did have sex I was fighting back tears because I understood then what it must feel like to be raped or molested because even though I was giving it up voluntarily, I didn't want to.
Since I don't drive, my bf usually drives me to doctor appointments when he wasn't working and to the pharmacy or else picked up my meds for me. He has also been paying for everything as I have been unable to work. My bf broke up with me because he said I've just been using him and that I don't appreciate anything and am entitled. It was then that I understood that what he meant was that he does all those things for me and I do nothing in return (meaning I don't give him sex). Now I feel like the only reason he was with me for the last ten years was for the steady sex and not because he loved anything else about me. He says I've changed and am not the person I used to be and he is right. I'm not the person I used to be at all-I wish I were but I can't help it.
I have only been on hydrochloroquine for three days along with a round of prednisone and I am hoping the low libido and other unwanted side effects will resolve in a few months now that I am finally receiving treatment for the disease that had been wrecking my body and my mind for so long. But now I am all alone and I am so hurt that he didn't think I was worth waiting for until my health improved and I could be my old self again. And I am angry that I wasted ten years of my life thinking I was in a relationship when in his mind it was just an arrangement of sorts where he got sex in exchange for the rides and paying for things I needed. He says he not gonna be a sugar daddy ( although he is far from being a sugar daddy, except maybe in his own mind). He said that when I took sex off the the table, I took him off the table as well. He said, "what did you think would happen when you cut me off? YOU DID THIS, not me." I felt bad enough as it was already- I know he didn't sign up for a relationship with a sick person with no sex drive when we got together 10 years ago. I feel bad that I am sick and now I am sick and alone and it's even worse. And the worst part is that I am stuck here with no money, no transportation, no one to help me and nowhere to go. The tension around here is so thick you could cut it with a knife. We live in this tiny little trailer that is way too small to be cohabitating with someone that is angry with me, yells at me, throws stuff and slams the door. He calls me "frigid" and points to my crotch and calls it a "dried up old thing". He hates me now. I think I hate me too. What can I do to fix this? What do others who are in a relationships when RA affects their sex drive? Is is better for people with RA or other ai. diseases to be single so this doesn't happen? I see a future filled with loneliness for me because no man is going to want to be with someone like me. It doesn't help that I started menopause (I am 52 now, even though before I became sick I was only about 35 in my mind). I don't think menopause has as much to do with this as the RA because I haven't had any typical menopause symptoms except for when my period abruptly stopped about two years ago after a lifetime of precision regularity. I thought that may have been caused by the multiple cysts that were discovered on my ovaries and uterine fibroids and not necessarily menopause because I thought that periods taper off graduallly in perimenopause and not abruptly from one month to the next like I did. Anyway, the rheumatologist suggested I see the gynecologist and I was thinking about seeing if I could get on hrt to see if it helped, but I don't really see any point in doing that now if I am just going to be alone. It's probably better that way anyway so I don't have to go through this again with anyone else but it doesn't leave me feeling very hopeful about my future. Life is really hard when you have to live it all alone, and it's lonely, too. I don't know what to do now... but I know I can't stay around here much longer if this is how it's going to be. Any advice?
Thanks for reading...
Hi
. You definitely have been going through a lot. The first think I want to say is that you deserve to treated with respect and your value as a person acknowledged. Toxic relationships are terrible under the best health circumstances, but when also dealing with a chronic autoimmune condition like RA can be very detrimental to your overall health. Your first priority and most important relationship, as our contributor Monica discussed here, is with you: https://rheumatoidarthritis.net/living/self-compassion-chronic-illness. It is important that you get yourself into a situation where you feel safe and can concentrate on your health and wellbeing.
You are not alone in having issues with libido related to RA and it is not your fault. Also, there are things you can do. Our patient leader Mariah wrote about it here: https://rheumatoidarthritis.net/living/that-thing-no-one-talks-about. At the bottom of the article there are links to a number of other articles she wrote on the topic. I also want to note that the steps you are taking to treat your RA and get it under better control is also a great step in the right direction.
You mention having just starting hydroxychloroquine. I want to note that it can take 6 to 12 weeks to notice improvement. I mention this so that you know that it is important to be patient and give yourself grace during this time period and hopefully your symptoms will start to improve soon.
Finally, I want to note that I happen to be the husband of someone with RA (my wife, Kelly Mack, is a contributor here). I know that everyone brings positives to a relationship and you are no different. A relationship may need to look at little different, but a good, positive relationship is absolutely possible and you deserve no less. Please know that this community is here for you. Best, Richard (Team Member)Hi
I’m really sorry that you are in this horrible situation. Any breakup is painful but feeling so unwell and low won’t be helping things at all. I hope that you are soon no longer living in a conflict zone and he and his temper move out!
Absolutely trying HRT is worth it as after a radical hysterectomy at 30, due to cancer, it wasn’t until HRT was started 3 months later that I started to feel like ‘my old self’ again. It is also now known to give protection against bone loss and dementia.
Most RA Drugs take at least 3 months to start having an impact so it’s important to hang in there and be patient whilst being sure that you have adequate pain relief to make life bearable.
I don’t know what the situation is where you live but it would really help for you to find a local Disability Advocacy service who can help you to explore what help is available to you from public funds or state benefits. I know that it’s hard to deal with these things when you are feeling very upset and low but it’s vitally important to sort out your finances so that money stress isn’t making your RA worse.
Finally, with regard to future relationships, only you will know if or when you want to embark on another relationship but don’t let illness or disability make you think that it’s not a possibility for you. Yes, there are folk who run a mile faced with long term illness/disability (my ex husband being one of them) but there are also plenty of kind, caring people who will judge your worth on who you are as a person not what you can do for them. You deserve much better and are entitled to being met with loving kindness.
I am long time single by my own choice having had several relationships in my late 30’s and 40’s after my children were mostly grown. I was lonelier in a marriage where I was diminished and belittled than I have ever been by myself - an important lesson to have learned. I struggled financially for a number of years post divorce and it negatively impacted my health.
It’s really important to get some emotional support and there are pro bono counselling/therapy services out there for those on limited incomes who have long term illnesses and disability. You might have to be on a waiting list for quite a long time but I would encourage you to seek this out as there is a lot of healing to be found in ‘telling everything’ to someone who is not otherwise involved in your life and you don’t have to see socially.
It made such a difference to me that when I could no longer continue with my physically active first career I retrained as a psychotherapist and had a whole second career!
Please know that you are not alone in finding yourself in this situation and I hope that others reply to encourage you.
Go well,
Cece.
