I wrote an article several years ago for people with severe disabilities, such as quadriplegia, cerebral palsy, amputees, severe head injuries, Down's Syndrome and various other dreadful and genetic deformities. Since the article was originally written for a different type of disability, I decided to re-read my old article. It sounded like a second grade text book on, "How to have sex if you have a severe disability", so I rewrote the article on an issue that pertains to people with MS.
I've had countless conversations with MS patients over the years and the one topic NO ONE wanted to discuss was their sex life, because they said, "I have no sex life". In talking with MS patients, It became apparent that the older individuals were more guarded about talking about their sexual relationships and MS. Although, I knew they had an interest in acquiring more information about this unmentionable topic.
Since MS is more commonly diagnosed in our younger years (20-40's), it was very apparent the younger generation had a different perspective on their MS, medications, and what they expected in a sexual relationship. There was one similarity that was consistent with everyone....denial of the progression of the disease. This is not uncommon for MS patients living with a disabling disease, especially since it is considered a "hidden disability". A hidden disability is a disease that can not always be seen by others that do not know you, so people do not believe that you are sick. Unfortunately, those of us living with MS have to eventually come to terms with the problems caused by the disease, and at least acknowledge that as time passes we can end up with some form of permanent damage.
To healthy individuals, the thought of a sexual relationship with a disabled person seems almost incomprehensible and unimaginable. This type of ideology can create a very uncomfortable topic of conversation. Most people (MS patients included) don't want to talk about or start a discussion on sexual relationships effected by MS, much less describe the alternatives to have a sexually fulfilling experience. Depending on the severity, of the person's disease, many individuals have to make sexual positioning adjustments and various other accommodations just to have intercourse. This is often a very awkward conversation for individuals to have with their spouse/significant other, and even more embarrassing to ask their doctor. The most important thing to remember is a person's sexuality is a very private, personal subject and talking about re-adjusting their sex life is often embarrassing, humiliating and many times people become uneasy during the conversation. This is especially true for those who once had a normal sex life and are now faced with no sex life due to the complications of MS.
As human beings, it is natural for us to have sexual desires, a craving for physical love, touch and a need for sexual intercourse with our partner/significant other. We want to share our love and passion with our partner without the feeling of shame and embarrassment caused by the many problems that accompany living with multiple sclerosis. MS causes a traumatic impact on a person’s sexual life, self-esteem, their perception of their body image and it leads people to question their ability of ever having a normal intimate relationship again.
Many people with multiple sclerosis are concerned about their ability to have children, worry about their partners leaving them, whether they are sexually desirable, or will they ever enjoy a sexual relationship again. Many assume that having a sexual relationship is no longer possible for them due to the significant loss of sensation and the other problems caused by the disease. As a result, many view themselves as non-sexual and try to avoid talking about sex when ever possible. These negative thoughts and feelings about their sexuality are normal, but very unhealthy and its strongly suggested that they receive professional counseling.
It is imperative that MS patients have open and honest discussions with their partner about their needs and their limitations. By sharing with their partner, they can learn as a couple to overcome the obstacles caused by the illness and learn to enjoy a healthy sexual relationship. Although, MS can be a very humbling disease that can seriously impair a persons self-esteem, the ability to live a normal life, so communication with your partner is critical to having a satisfying relationship that meets both partners' sexual needs.
Our feelings of sexual arousal begin in the nervous system, then the brain relays the message to our sex organs via our spinal cord. MS has a way of damaging the nerve pathways that affect our that sexual responses, so our brain is unable to get the message to right place. Even if the message were to be received, it doesn't stop the myriad of the everyday MS symptoms that wreak havoc on a person’s sexual life, such as fatigue, muscle spasticity, pain, and mood changes.
A few sexual problems that affect MS patients are:
(1) A reduced sensation or a painfully heightened sensation.
(2) Vaginal dryness in women.
(3) Erection problems in men.
(4) Trouble reaching or ever having an orgasm.
(5) Loss of our sexual appetite due to the other problems caused by
(6) Sexual positioning problems due to muscle spasms and/or the
general pain that we often experience in our extremities and joints.
(7) One of the most embarrassing problems is bladder or bowel
incontinence or leakage.
There are some simple solutions to many of these troublesome problems, for example:
(1) Alternative methods for the reduced sensations, such as using a
vibrator with your partner. Talk with your partner about trying
different positions to lessen your pain. If you don't talk to your
partner, how will sex ever be a pleasurable experience for either of
(2) Buy a lubricant for the vaginal dryness such as KY gel. If you are
embarrassed to purchase this type of item then go online and do
a search for vaginal lubricants to purchase online.
(3) For the men, see a urologist about the newest medications and
devices for (ED). Search the internet for erectile dysfunction (ED),
don't buy the non-prescription medications, but read about the
newest options available for men and check to see if you are
healthy enough to use one of the medications. If you are not able
to use the medications, research the newest devices to help men
with (ED). You have a disease that effects your central nervous
system, so do not be embarrassed or ashamed about talking with
your physician about erectile dysfunction (ED). Remember, your
multiple sclerosis has caused your medical condition, most men
with (ED) don't have a disease of the central nervous system.
(4) Again, use alternative methods for sexual stimulation with your
partner. These can help to overcome slow arousal or your
impaired sensation due to the nerve damage. I can't stress enough
how important it is to talk with your partner about your problems,
because ignoring the subject can cause your partner to think you
are not interested in them physically.
(5) Do something to surprise your partner, such as a romantic
evening alone, wear something sexy to show that you're in the
mood, leave them a provocative note or message. The idea behind
this concept is to simply try to re-start the fire and together create
alternative strategies that will help you regain your sexual
appetite. If you don't address the issue now, as your MS
changes or progresses you will have to either evolve with your new
situation or risk losing your partner. Keep in mind, that we all have
sexual needs and a desire for a close intimate relationship with
our partner. If you don't want a relationship with your partner.......
well, then that's a whole other article.
(6) Talk to your partner about how you like to be held, positioned and
what turns you on that makes sex pleasurable for you. If you want
more ideas on sexual techniques, go online and read about sexual
positions, stimulation techniques, and/or other things to do with
your partner. If you prefer having a book and are embarrassed to
go to a store, go to Amazon.com and you can purchase books
without having to leave the comfort of your home.
(7) A few ideas for bladder and bowel problems during intercourse include
trying intermittent catheterization to control urinary leakage
just before sex, or asking your physician about prescription
medications to help control your urinary leakage. If you are having
anal leakage, I suggest consulting your physician on how to
control the problem.
In closing, remember communication is the key to resolving a few of our problems with MS. Your sexual relationship can be just as frustrating to your partner, due to not understanding why things have changed. Although, most of us don't view ourselves as disabled, we actually are disabled in the way the public perceives our disease. My point is that people with disabilities are capable of over coming the most difficult, horrendous obstacles and diseases imaginable. People on the outside looking in.....often have stereotypical perceptions of people with disabilities. Sadly, until their lives are impacted by a catastrophic illness or injury they will never understand the significant loss disabled people endure.
For information on how to cope with MS in your life, resources are available online through the Forum Health Page Resources, or you can order pamphlets from the multiple sclerosis organizations.
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