Self-love, self-care, relationships, and sex or sexuality all tend to fall to the backburner when patients are living with illness. The issue with that is that chronic illness lasts a lifetime. I have been ill since I was five-years-old. I cannot be expected to be non-sexual all my days.
It's just not going to happen.
|Especially when I clean up so good|
So, why aren't we discussing these topics in the chronic illness community more often?
At Medicine X in September, there was a panel on relationships and intimacy with illness. It was brought up that those with chronic illness wished that physicians would bring up Quality of Life (QOL) issues more often. Roni Zieger pointed out during a Q&A session that 1) physicians are not taught how to help with these things, and, 2) that physicians themselves may be facing difficulties in these areas due to many factors.
Working for a group of pediatricians, I can certainly see validity especially in the last point. I watch the physicians I work with work sometimes 15 hour days a few times a week between clinical and administrative work. It's amazing.
Sex especially is a taboo topic. Those of us living with disabilities are often infantilized by those around us, or it's assumed that we don't want/need sex. I am sure that part of that has to do with the fact that very few of us bring up these issues ourselves, save myself, Mariah Leach, and a few others.
It's all so wrong.
My answer to this was to start a chat that runs Thursday nights from 7-9 pm ET on Twitter - #ChronicSex. We discuss topics from mindfulness and activities for building self-love to masturbation to dealing with the caregiver/caregivee dynamic in a relationship to full-on getting it on as we discussed last week.
In the few weeks since the chat started, I have learned a lot about others and myself.
One thing I already knew from my experiences as a sex-positive feminist and chronically ill women was that partners may not initiate sex because they're worried about our pain levels. Our medications also affect our sex lives, whether they directly impact libido or cause issues like vaginal dryness or extreme fatigue and nausea.
I'd rather not vomit on my husband.
As a society, we don't discuss pleasure in regards to women often either, whether that's masturbation or sex. When you consider that the majority of people with certain chronic illnesses are female, this is really bad.
On a more emotional level, our partners can be quite dismayed about our illnesses. They mourn what our lives may have been in the past and feel both downtrodden and helpless because they can't solve our pain.
Those of us with illnesses also tend to focus on how inadequate we are. It's put in our face in many ways, even when we see pharmaceutical ads for medications that failed us.
Perhaps what I've learned the most during the weeks this chat has gone on is how much our ability to be in a relationship affects our self-worth. As a younger woman, I felt the need to be in a relationship or I wasn't complete. Now that I'm married, it's easy for me to say that I wouldn't necessarily need one because I'm not in that position. The reality is that 1) my husband is my main form of support, and, 2) society tells us we grow up to have a family and provide for them. If going on dates is difficult due to our illnesses, this part of our lives is incomplete, leaving us feeling like bigger failures than before.
This can be especially true if we've had a relationship end due to illness as well.
And then we crave intimacy. Sex is a basic human need and without it, many struggle.
I've also learned a lot about myself.
Talking about sex and sexuality has been a passion of mine since high school. I volunteered with Planned Parenthood, helped get people educated about sex, and was always that person who had condoms to hand out just in case.
This chat has renewed my passion for health advocacy in a way I wasn't sure was possible.
It's also opened a door for the open discussion of sex, relationships, and other Quality of Life issues not commonly talked about. These issues heavily impact our lives and yet we stay silent because it isn't proper to discuss these things or we're damaged and should be happy that we're in a relationship at all.
I hope that, in openly talking about these issues, we can do more as patients to help each other and be able to explain issues to physicians and others more clearly.
About the author:
Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.
She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.