Body Confidence and Feeling Sexy With Chronic Illness
It's hard to learn to love your body, and it can be even harder when you live with a chronic condition like ankylosing spondylitis. We asked our advocates, Steff and Lisa, some questions about their journey with AS and how it affected their body confidence and sensuality. They also offered some advice for those struggling.
How has your body changed since your diagnosis?
Steff: My body has changed a lot since my diagnosis of AS. I'm less mobile and less flexible. My mobility was the best it had ever been with doing work out programs daily and working a physically demanding job. In a matter of weeks, I went from that to bedridden and unable to move. Once I found yoga, the mobility and flexibility improved, but I'm still nowhere near where I was before I had AS. For a 24-year-old, I sure feel a few decades older on a daily basis.
Lisa: I've had AS symptoms since I was about 24-25. I'm 34 now. I was always a size 4, but now I'm a size 10. I do love my body, but the road has been long. Not because I'm bigger, but because I had to get used to a change that came from a) inability to move as much and b) steroids when I was having uveitis (the worst!!) over and over again. I think part of it is age, too. It's gotten WAY, WAY more inflexible. Shockingly so, actually...Some days I feel 34. Other times I feel like I'm 75. I swear.
Have these changes led to a different relationship with your body?
Steff: For a long time, I was angry with my body. "Why did this happen to me?" and "What 21-year-old needs to use a cane?" are things I would ask myself on the regular. I didn't like my body for what it was doing to me and for the pain and suffering it was causing me. I hated it because it made me feel different and isolated from everyone else my age. I felt like my friends looked at me differently, and it was all because of how my body operated.
Lisa: Well, this is in direct opposition to how I feel inflexible and crappy sometimes, but nowadays I treat my body with extreme love and respect. I am my own altar and saint; that's how I see it. I eat well, drink loads of water, work out every single day...I see an overall benefit in my mobility and mood. I'm stronger, more toned, and physically fit. I have other ways I'm not the pinnacle of health (I'm still a bit of a party girl here and there) but I try my best! Although I have moments of anger, self-pity, denial, and feeling betrayed by my own genetics, this journey has taught me self-love, self-respect, and self-accountability.
How do you maintain a connection with your sexiness and sexuality through chronic illness and/or disability?
Steff: Over the 3 years I've had AS, I've learned a lot about how my "new" body operates. I've learned how to live through a flare, how to deal with fatigue the best I can, and how to appreciate my body even though it's acting against me. As frustrating as having a chronic illness can be and is, there’s no point in being angry for the rest of my life. Instead of actively working against my body, I decided to appreciate it for all that it does for me. I wear things that make me feel comfortable and sexy even if I’m not going anywhere or seeing anyone. I decided to start being sexy for me. This has built up my confidence to a level I’ve never seen myself at. I’m not sure I would have gotten here without a chronic illness, to be completely honest.
Lisa: I can't speak to anyone's experience, but for me, I never lost sight of my sexuality or my sexiness. I think I worked to not lose it. I've always explored the body, desire, sensuality, and humanity in art and literature and my own creative writing, and I refuse to let AS take that from me. I try to keep that connection alive — through dance and taking sexy selfies and self-pampering and through conversations about sexuality and writing about desire. I also try to be present and enjoy sex so that I can reframe my physical experiences. I'll put it this way: To me, it's a given that disability is sexy! Bodies and people and minds are sexy. And when we have conversations like this, we transcend the stigma and erasure.
Has chronic illness changed the way your sexual partner(s) see your body?
Steff: I haven’t had a long-term partner while having AS, but I’ve had short-term relationships and I’ve talked to a lot of people on dating apps. In relationships, there’s never been an issue with my AS and sex. The main thing that came up in my mind when I read this question was the multiple times I’ve been asked, “Can you even have sex with your condition?” I get asked this by complete strangers after telling them about my disability. I tell them that it’s none of their business, but yes, I can as long as I’m not flaring. (I’m usually appalled that a stranger is asking me about this, so that’s as far as I take my answer).
Lisa:My partner is respectful and sweet to me and would never think me bad or different because I have AS. As people with disability or illness, we need to prioritize our bodies and our self-respect — and we shouldn't tolerate a partner who can't see us as sexy or beautiful because of our disease. We have to be communicative when I'm extra tired or in lots of pain, and it's all about that vulnerability and openness. We are a couple, so we have to respect both of our needs.
What would your advice be for someone struggling with body confidence and feeling sexy while living with a chronic illness and/or disability?
Steff: I recently got a comment on a dating app saying I was "too hot to have a disability". I feel like that comment sparked something inside of me. I've always been on the body-positivity train, but this made me think. Who's to say disabilities aren't hot? Or sexy? Why can't they be? There's no reason they can't be. Just because I have a disability, it doesn’t make me any less of a person - sexiness included. My advice for someone struggling with body confidence is to own your illness. Something that’s a common feeling with a chronic illness is the loss of control. Take back control of your body and start to feel amazing. Do things for you. Self-care is an important part of what made me feel so confident in my disabled body.
Lisa: Keep firm in your boundaries and expectations for partners who see the whole you. Above all — sexuality and desire and connection is extremely personal and individual and rooted in many, many layers of self and experiences and traumas. You're not bad, broken, or weird for not feeling sexy or confident. Living with a disease can upend your sense of self while wreaking havoc on your body. Start small. Put on some perfume, listen to your favorite sensual music, take a beautiful bubble bath, buy yourself roses, get dolled up for no reason. I think like all things, it's not about an a-ha moment, but a work-in-progress.
Has AS affected your body image?
Other than back pain and fatigue, what is the most common symptom that AS patients experience?