Friday, July 4, 2014

Sex and chronic illness

The first time I researched sex in the context of chronic illness, it was because I had a client who had survived colon cancer.  She had undergone chemo and surgery and had an excellent prognosis, but she and her husband didn’t have sex anymore.  Ever.

Something a lot of people don’t know about me is that I used to be a sex educator.  I taught people of all (adult) ages how to have better sexual relationships, both with themselves or with partners.  Before I had that job, I had just assumed that everybody had some kind of sex that satisfied both parties.  Man alive, was that not the case.
I learned my not judging skills in this job.  It is not easy to open up to a stranger about your physical or psychological issues around sex and I wanted to be worthy of those confidences.  I spent a lot of my time listening while people exorcised their intimacy demons.  Many of those people looking for help were chronically ill or had partners who were. 
Sex, in pretty much any form, is a complicated process.  It involves several body systems and is physically demanding.  Chronic illness can affect the function of some of those systems, making sex less pleasurable or appealing.  If chronic pain is also part of the illness, sex can be difficult for that reason.  Some patients find they are unable to identify satisfactory birth control options.  Treatment, including medication, can also cause side effects of low libido or can interfere with sex in other ways.  And these are only the physical issues.
Sex has a large mental component.  This was something I used to harp on as an educator.  “How many of you have been in bed, having sex, when suddenly you think, ‘Did I pick up stamps on the way home?’ or ‘I need to clean the bathroom tomorrow?’” I was always met with a chorus of nods.  Even when everything is working as intended, it can be hard to get your mind and your body on the same page.  It gets exponentially harder when you are chronically ill.  Speaking just as a mast cell patient, I deal with varying levels of depression, fatigue, pain and stress on a daily basis.  That certainly complicates matters.
Mast cell patients also have a specific problem when dealing with sex – arousal causes histamine release through hormone action resulting in mast cell degranulation.   Orgasms in women are partially facilitated by mast cell degranulation and histamine release.  In men, high circulating histamine levels can cause premature ejaculation.  The role of mast cells in sex, and accompanying mediator release, can cause symptoms or even anaphylaxis in mast cell patients.  Many must premedicate in order to safely have intercourse, or even foreplay. 
I don’t see the impact of chronic illness on intimacy discussed a lot.  The reality is that it is an enormous factor.  Sexual difficulty was ranked as one of the most disabling symptoms by mastocytosis patients in a French study.  The stress this places on a person, and their partner, is enormous.  If both parties are not patient and willing to address the issue directly, it can often cause distancing in the relationship that further reinforces the problem.  This is further compounded by the fact that many doctors do not discuss the impact of chronic illness and treatment on sex.  Many patients are on their own in trying to fix this hugely important problem.
This is the first installment in a series on sexual health in the chronically ill.  If you have specific questions regarding sexual symptoms, please feel free to email me at lisa.klimas@gmail.com.  I will answer them on the blog and your identity will be kept 100% confidential. 
Everyone deserves to have good sex, even the chronically ill.

3 comments:

  1. Thank you for speaking about this subject. It's not easy to deal with it or share our experiences. I am not sure if I have a mast cell disease (still in the process of diagnose) but I do have many issues due to my allergies. My Oral Allergy Syndrome has gotten much worse in the last 2 months and a half and I have ginormous issues to eat. Basically I can't eat veggies, fruit, potatoes, wheat, corn, rice, etc. For some people cooking these makes them safe, but not for me. I had to look for alternatives but I lost 6 kg in less than 2 months. I was weak, physically and psychologically. Also, as you said, sex can make reactions worse. I even react to my own sweat. Also, medicines and this stress reduces libido considerabily. My boyfriend is super comprehensive but illness takes its tall on both of us. It would be great if you could share with us some advice on this respect. Not only how to avoid reactions, but also how to get in the mood and try to forget chronic illness to focus on it.

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  2. Before I started premedicating (at least 20 mins. before) with an H1 and H2, I was having nausea, hives and crying uncontrollably. My poor husband, I was trying to let him know how wonderful he was, while crying and trying not to barf. I don't think I was convincing. Thankfully I read somewhere about premedicating, made a world of difference for both of us! ;)

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  3. I used to get head pains so bad, I thought I was having a stroke once. It was not something I was comfortable discussing with my male allergist, & my GP hasn't a clue about Mastocytosis & doesn't care to learn. Thank God for masto forums and people like you. I was fortunate enough to stumble upon posts like yours. I'd never have known about pre medicating. It would be awful to is out on such an important part of a relationship when there is something that can help.

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