When Living With a Rare Disease Negatively Affects Sex Life

Sigh… I hesitated writing about this topic out of the initial shame I felt in even having gone through any of what I am about to share here. But I know it's an important topic to share about because there are a lot of other rare disease patients needing to know YOU ARE NOT ALONE in this reality!

I hope that, by sharing, others will feel less alone and maybe feel free to share about their own challenges in this realm of life, too.

The impact of rare diseases on sex life

Many rare diseases are of the chronic illness variety, and many of those can have symptoms that can either affect your sex life or require treatments that can have negative side effects on your sex life.

The impact of my rare diseases affected my sex life via both physical changes and the psychological challenges those caused.

Physical effects brought on by my MAC lung disease diagnosis

I first began to notice the physical impact after I was diagnosed with MAC lung disease. I needed to take antibiotics, and the fallout included a perpetual yeast infection and feeling like I had the flu every day. My self-esteem began to plummet. I felt depressed, ashamed, and angry all at once.

The physical impact caused emotional dysregulation. Although I went to therapy, I was never able to bring up any of this with my therapist; I never even considered it, as I was just too ashamed of my reality back then and was not one to easily discuss anything of a sexual nature.

The end of my yeast infections and the beginning of self-compassion

Since getting diagnosed with cystic fibrosis (CF) and being put on a drug that thins my mucus, I have not had another yeast infection, and I was able to finally get off the antibiotics. I reflect back on my past and realize now that my vaginal mucus was never normal before my CF treatment fixed it; I just didn't know what was normal.

My history of frequent vaginal micro tears and need for lots of lube finally made perfect sense. I also began the process of growing a lot of self-compassion for myself around all of the fallout from having had undiagnosed CF until age 66!

My marriage was ending as I was healing

Probably the saddest part for me was that my marriage was ending exactly at the time I was put onto the drug that fixed me "down there." One of our marital issues was the ongoing fear of my getting hurt during intercourse.

I will share, though, that I am ultimately glad the marriage ended for many other important reasons, but it still felt sad to know that I was losing my sex partner just when I finally felt confident not to worry during intercourse. At least moving forward, I know I am "good to go" if I ever again have intercourse... eye roll here.

Making adaptations to enjoy sex

Ongoing fatigue from both fighting the MAC lung disease infection and living with undiagnosed/untreated CF was yet another problem that affected my sex life. I often didn't want to be sexual late at night, to the point that I decided I was "a morning person."

Looking back, my illnesses simply had me drained at the end of each day. I am proud that I was at least able to tell my partner that I would enjoy love making more in the mornings, so that he didn't think I just wasn't into him. I guess this would be considered to be "an adaptation." I imagine others with rare diseases need other adaptations to be able to enjoy sex.

Sharing and supporting one another in our full realities

Overall, for me, these challenges brought a lot of grieving and growing self-compassion. I feel glad to have been able to share about this stuff here. I hope my shares will help other rare disease patients embrace their full realities, including the fallout of a sexual nature from their illnesses, and that they will feel encouraged to let go of any shame and to do their best to optimize their sex lives, too.

Please feel free to share about this topic and your experiences in the comments below. As always, it's in sharing that we can show our support and also learn from one another.