Today I want to talk about something we usually don’t talk about, maybe we don’t consider it essential anymore? But it is!
For example, I pretend, that there are more important things than that, I put the issue in a drawer and close it. But I keep coming across forum entries, or the topic in the circle of friends. Shortly, after my diagnosis I was asked about this topic at the doctor’s, and since then never again, although I have visited several doctors since then. Admittedly, you have other problems with MSA than sexuality, and the topic is fading into the background. Remarkable, however, that with limitations of men (erectile dysfunction) it is occupied almost everywhere. Why is it that women’s problems are hardly noticed here?
For me personally, the whole thing wasn’t an issue for a long time, I don’t have a partner, and except for a short moment when I questioned the issue, afterwards the whole thing was done for me. And that’s how I still see it today.
I used to be a little more complicated before, but when you’re passive, you “stand” through the whole affair (must be awful). But that is not me. I see it again and again that the issue occupies women and they don’t know where to go with their doubts and questions, does that only concern them or others perhaps also? You can’t even find anything about this in the deepest corners of the Internet.
Especially women who live in partnership are concerned about. They have a partner and they feel bad anyway, they often feel like ballast which makes their partner’s life more difficult. These are healthy people who have to deal with a lot of things because of the illness of the other anyway, and have to reduce their own need. Of course they want to live out their healthy and normal sexuality.
I have experienced the deep conflict of patients a few times, and it tears my heart apart, because I can empathize. From my own experience, I know what it’s like, not to like the own body anymore, not to feel desirable. The disease has often changed the own body, possibly several kilos up or down, erogenous zones no longer function properly (e.g. woman doesn’t get wet, which is essential for sexual intercourse), incontinence can play a role, the body can release unwanted sounds in unwanted moments, etc… I have received confirmation from every woman, whose attitude I know in this matter, that their own lust suffers and that they are disappointed by their own bodies. Admittedly, which woman gets lust with such thoughts? But a woman doesn’t want to reject her own partner, who already cares for her lovingly. This is the reason, why people often nod off and make love. Which, however, for women with this disease must be an additional ballast and my let my hair in the neck stand up. Many men say “I also like you even if…” but unfortunately this does not help us, the woman’s lust works differently than that of the man. We have to like ourselves. I know, for example, how disturbing it would be for me, to get out of breath from everything, how my own restriction of movement would disturb me. To simply give myself to a man, I could not make this compromise. Dear men, stop saying “I find you attractive in this and that way”. So you can save the saying. Sensitive and clever instinct I consider much more goal leading. But must I honestly admit, that I (personally) hardly trust a man in this. But also that I feel sorry for the men who missed out. We tick into this matter decisively differently and we women are unfortunately much more complicated than men.
Furthermore, I have made acquaintance with the term “anorgasmia”. I have learned from most of the women I have spoken on this subject to, that they have become incapable of experiencing orgasm. It occurs to me that I was no easy target even before my diagnosis, and the man already had to make an effort, perhaps these were already signs of the illness? Who knows? Anyway, this is just awful.
All these questions let this matter sweep under the carpet for me. Sometimes I am glad not to have a partner and not to have these problems. Sometimes I would like to have one and I ask myself “was that then?”.
All in all, I find that these issues make managing other symptoms even more difficult. And because it is a bit of a taboo subject. Which MSA patient with severe symptoms will consult her gynaecologist or neurologist? And yet it is a serious topic that puts even more strain on our sore soul.
I wish here more sensitivity, assistance and attention.