Three experts in the fields of counseling,
medicine, and therapy give their thoughts on this important topic
Part I: Introduction
Information for this portion of the article has been provided by Lara R. Krawchuk, MSW, LSW, MPH, director of clinical services of the Conill Institute for Chronic Illness. Her career has been dedicated to serving the needs of families and individuals living with physical illness. She is also an adjunct professor with the University of Pennsylvania’s School of Social Work.
Intimacy may be defined as anything that makes one feel close to another, particularly in a personal and private way. Achieving intimacy can be difficult for many people, not just in a physical sense, but in a mental and emotional one as well.
For some, intimacy refers solely to the physical aspects of a loving relationship. Intimacy is often portrayed this way in the media, through TV, radio, and advertising. While this is one aspect of intimacy, many other components are involved. Simply touching one another, holding hands, giving a massage, and leaving a card with a sweet note written inside, are all examples of other ways to express and feel intimacy.
When a chronic illness such as MS is involved, new challenges may arise, including physical limitations, changing emotions, and new roles that each partner may need to fulfill. While these issues can make intimacy more complicated, taking a pro-active approach can bring physical, mental, and emotional closeness into a relationship.
The first step toward improving or attaining intimacy in a relationship is communication. Each partner must be open and honest with his or her feelings, desires, likes, and dislikes. This can only be done, however, if the individuals involved have a mutual trust and respect toward one another. With this important trust in place, couples may work toward a fulfilling and intimate relationship.
Many individuals may feel defensive or embarrassed when talking about intimacy, but no one needs to feel this way. The topic of intimacy is seldom discussed enough. This is true not only for partners, but also for individuals who need to discuss intimacy with their physician. Once someone gets past the initial discomfort of talking about intimacy, he or she opens the door to a deeper understanding of the emotional and physical issues involved.
Long before the lights are dimmed, couples should be proactive in their approach to intimacy, talking openly about their needs, desires, and what may or may not be pleasurable for them. Discussing one’s goals should be done at a separate time from the heat of the moment.
Once the lines of communication are open, partners may benefit by redefining what intimacy should be for the two of them. For instance, one partner may want more sexual activity, while the other may be looking to develop more emotional closeness through intimate talk, other kinds of touching, and cuddling.
Couples need to have a mutual understanding of what makes them feel close. This can be tough, but communicating is well worth the effort. Couples should set realistic goals and then find ways to accomplish them. If being touched in a certain way or being in a certain position is uncomfortable, the one partner should tell the other and not just endure an unpleasant situation. Finding what works for both people is vital to working toward a better intimate relationship.
Spontaneity is often affected by MS, and switching from the role of care partner to lover can also be a challenge. Setting a different scene for romance can be helpful. For instance, going to a different room, turning down the lights, playing music, and having food or drinks, can all contribute to making the moment more spontaneous and exciting.
For people who are not in a relationship, they should consider what they want for themselves, so they are better prepared when in a relationship. If shyness or self-consciousness is an issue, they should find ways to overcome these feelings, which can otherwise hamper one’s efforts to meet and develop lasting relationships with others.
Couples need to be patient. Intimacy is challenging for everyone; MS just adds another layer. Couples should try new things and seek additional information on different ways to attain their goals. Sometimes this information can be sparse and difficult to find, but help is available through various resources such as books, the internet, and therapy.
Part II: Looking at Intimacy from a Medical Perspective
Information for this portion of the article has been provided by Alicia M. Conill, MD, medical director and CEO of the Conill Institute. She is a clinical associate professor at the University of Pennsylvania’s School of Medicine and the former senior medical director for Quality Care at the University of Pennsylvania Health System.
Dr. Conill was diagnosed with multiple sclerosis in 1986. She founded the Conill Institute for Chronic Illness to teach
doctors, nurses, and social workers what it’s like to have a long-term illness or disability. As part of this program, Dr. Conill sends the medical professionals into the “real world” with wheelchairs – giving them a first-hand experience of the obstacles that individuals with disabilities encounter. Her dream is to help care partners experience disability through a similar day-long program.
How Self Image Affects Intimacy
Many doctors might agree that the most important sexual organ is the brain. With respect to intimacy and MS or any chronic illness, a major barrier may be a poor self image and lowered self esteem. Sometimes people with an illness may not be feeling well, or may feel unattractive, leading them to believe that no one would be interested in them romantically. This sets up an unhealthy environment for exploring personal relationships.
Low self esteem may be the first sign of clinical depression – a very treatable but dangerous condition, frequently experienced by individuals with MS. While feeling “down” from time to time is fairly normal, depression is much more serious. If feelings of poor self-esteem, helplessness, worthlessness, or other symptoms of depression persist for a period of two weeks or more, a medical professional should be consulted.
For more information on the symptoms of depression and its treatments, readers may refer to the cover story from MSAA’s winter 2003 issue of The Motivator. Anyone who would like a copy of this article may go to MSAA’s website at mymsaa.org/publications/motivator/ for an online version, or contact MSAA by calling (800) 532-7667 to order a copy.
Everyone needs to feel and cultivate an attitude that he or she is worthwhile. To improve self image, an individual must first acknowledge that a problem exists and that he or she has a poor self image. Once the problem is recognized, talking with someone (a friend, relative, care partner, health professional, or others in a support group) can be helpful. If uncomfortable speaking with a partner about intimacy, confiding with a close friend or relative can often serve as a
good practice run before broaching the subject with a lover.
Support groups are frequently offered through local hospitals and community centers, which may be located by searching online. Support groups allow participants to reach out and share their concerns with their peers, and individuals with varying levels of disability may have common experiences and emotions to discuss. Often the issues are the same whether someone has MS or a different condition, such as spinal cord injury, lupus, or rheumatoid arthritis.
Sometimes support groups are held specifically on topics such as sexuality and intimacy. These are not just for those with a chronic condition, but also for those close to them, such as friends and care partners. Support groups should be a match for the individual attending, and if someone new is feeling uncomfortable, he or she should look into a different group rather than feeling obligated to stay.
Teleconferences held by pharmaceutical companies and other organizations frequently choose sexuality and intimacy as the main focus. This may be a good place for someone feeling embarrassed or self-conscious to start. This may help give the courage needed to move forward and talk to others about such issues.
The most important factor in terms of establishing an intimate bond with another person is good communication. If experiencing any physical limitations or emotional concerns, a partner needs to explain how he or she is feeling.
For instance, if experiencing pain or exhaustion,
if feeling unattractive, or if things are happening that may affect one’s interest or ability, these things should be discussed openly so one’s partner does not misinterpret such symptoms as an
indication of disinterest or rejection.
How Physical Symptoms and Limitations Affect Intimacy
Many different symptoms of MS may create new issues with intimacy. These may include limitations in mobility, weakness, and problems with coordination. Changes in sensation, muscle spasms, pain, and urinary symptoms can also interfere with sexual activity. Fatigue and depression (both common in chronic illness) can often affect female and male sexual responses and the ability to perform.
Intimacy issues can result from other problems as well. Side effects from medications can often play a role, causing exacerbation of symptoms such as fatigue, weakness, and sleepiness. Diabetes, menopause, and other conditions can also impact sexual function and mood, so recognizing these as other variables that may be contributing to the problem is important.
Fortunately, the impact of these symptoms, when addressed individually, may be reduced or minimized through various strategies. Some symptoms, such as mobility and problems in positioning, may be accommodated by finding new positions that are comfortable for both partners. As with any intimacy problem, partners need to openly communicate how they feel. Discussing positions that might work versus ones that cause pain can help with discovering options. Resources (physical and sex therapists, books, and tapes) along with accessories for individuals with disabilities can also offer assistance.
While certain positions may cause discomfort, pain caused by MS can affect individuals in many other ways. An increase in sensation can occur for some, and a light touch can feel painful and knife-like. This condition is called “hyperesthesia.” This can be confusing for one’s partner, as someone experiencing the pain will often pull away – and if not explained – the other person may misinterpret this as a sign of rejection. Pain is an invisible symptom, therefore communication is key. If one area is painful when touched, then other areas need to be explored to see what feels pleasant.
Another type of neuropathic pain (pain resulting from damage to the nerves), is called “dysesthesia,” and this can feel like a burning or squeezing sensation. Some medications can help, including Neurontin® (gabapentin) or a muscle relaxant. Another strategy is to create a distraction by having a movie on or playing music. Even when not in an intimate situation, joining in other activities such as a game or puzzle, can help to cause a distraction and take the mind off the pain, particularly at night when everything is quiet and pain seems worse. Self hypnosis may even be effective for some by shifting one’s reaction to pain.
Sensation can be reduced or even absent (known as “hypoesthesia”), and this may involve intimate areas. At this time, no drugs are available to increase sensitivity to areas with lost sensation, but some agents are being tested. Sometimes using added pressure can help, as well as trying different things to increase or change the sensation, such as a vibrator (for women). Some people find other ways to compensate for lost sensation. A woman at a recent conference spoke about her discovery that a bag of frozen peas helped to improve external sensation. Safe experimentation can sometimes yield surprising results.
Spasticity symptoms may also affect intimacy. Spasticity, if not too severe, can be helpful because it often adds a degree of stiffness needed for mobility. Spasms, on the other hand, may not be a good thing – particularly during intimacy. Some people may take an extra dose of their anti-spasm medication, such as Lioresal® (baclofen) or Zanaflex® (tizantidine), prior to intimacy to ensure that spasms do not interfere. (Please note that any changes to one’s dosing or medications should only be done under the guidance of his or her physician.) As mentioned earlier, these types of medications can cause fatigue.
Urologic problems can interfere with intimacy, with issues such as incontinence, the need to use a catheter, and urinary tract infection (UTI). Urologic nurses specialize in these areas and can offer helpful information. Medical information can also be found on reputable websites (such as www.urologychannel.com) or from related agencies. Broaching the subject of intimacy and urologic issues with a new partner or with a physician can be difficult, but as with all intimacy issues, explaining the problem and openly communicating are key to working toward a rewarding relationship.
Visiting the bathroom immediately prior to being physically intimate is a good strategy, along with checking with a physician about medications that may help improve continence. With indwelling catheters for women, or suprapubic catheters for men, the tube should be secured to the leg with medical adhesive tape, keeping it out of the way. If either partner is allergic to Latex, the user should look for a “hypoallergenic” type of medical tape.
Urinary tract infections (UTIs) often cause a burning sensation, and sometimes blood in the urine. UTIs are common and women should not immediately assume that UTIs are a result of their MS or being physically intimate, so if a UTI occurs
frequently, a physician should look into possible causes. Sometimes a woman may have a “floppy bladder,” which retains urine and leaves it predisposed to infections. If sexual activity is determined as the cause, some women will take an antibiotic before being physically intimate as a preventative measure (only under the advice of a physician).
Changes in mood, a reduction in sex drive, fatigue, and associated depression, can interfere with intimacy. These as well as other physical problems can lead to female or male sexual dysfunction. For women between the ages of 35 and 55, these symptoms can often be related to “peri-menopause,” a time when the body is changing hormonally. This can cause dryness, mood swings, reduced desire, sleep problems, and associated depression.
To experience these types of changes along with MS is challenging, and the specific causes of the different symptoms should be sorted out by one’s physician. While no drugs are available at this time to treat sexual dysfunction in women, treating the individual symptoms – such as getting professional help for depression and using a lubricant to compensate for a loss in secretion – can be of much benefit.
For men, treating the individual symptoms such as depression and fatigue is important and will certainly help sex drive and intimacy. If physical performance is an issue, and this continues despite treating the other symptoms, then different options need to be explored. For some, sexual performance is impaired by MS, related to nerve damage. Years ago this was a very frustrating problem for men with MS, and options included giving oneself an injection at the time of intimacy, or getting a surgically implanted pump or rigid implant. While these methods are still used for certain conditions, new medications have become the first choice for treating impotence.
As many already know from advertising, several drugs are presently available, including Viagra® (sildenafil citrate), Cialis® (tadalafil), and Levitra® (vardenafil HCI). These new drugs have revolutionized the treatment of male sexual dysfunction, and those experiencing symptoms should see their doctor for more information.
Many factors can be involved with MS and intimacy. Despite this fact, very few physicians will ask an individual with a chronic illness about his or her sexual concerns. This is unfortunate, particularly since medical students are taught very early in their training the importance of asking these types of questions and how to approach individuals in a sensitive and non-judgmental way. Often a nurse is more likely to ask. If one’s doctor, nurse, or therapist does not ask if a client (i.e., patient) is experiencing problems with intimacy and would like more information, then the client should ask the healthcare provider for information and resources that address sexual concerns.
Part III: Regaining Intimacy
Information for this portion of the article has been provided by Sabitha Pillai-Friedman, PhD, LSW, a relationship and sex therapist at the Institute for Sex Therapy, Council for Relationships in Philadelphia. She has been a psychotherapist for nearly fifteen years, working with
individuals and couples in all stages of the life cycle. She has taught graduate level courses at the Graduate School of Social Work and Social Research at Bryn Mawr College and at the University of Pennsylvania School of Social Work.
Intimacy problems for individuals with MS are two fold. First, the affects of nerve damage may compromise the messages sent from the brain to the sexual organs. Second, MS symptoms such as fatigue, spasticity, pain, and sleeplessness can play an important role with intimacy. Some of these symptoms are invisible, so partners may have trouble empathizing with someone who looks fine, and may feel rejected when their partner does not respond positively. The most common symptoms with intimacy reported by individuals with MS are: reduced or painfully heightened sensation; dryness (women); difficulty with sexual performance (men); trouble reaching a climax; and loss of libido or sex drive.
Low desire is often a consequence of fatigue and pain, and may be aggravated by low self image and not feeling good about oneself. Individuals with MS may complain about self consciousness, particularly over symptoms such as spasticity and incontinence. These problems may cause embarrassment, and after having a bad experience, some people may shut down, feeling as though they can’t be intimate again. When embarrassed, individuals can become anxious, affecting sexual function. When anxiety is lowered, couples are free to try new things and regain intimacy.
How can anxiety be reduced? Couples need to be able to communicate with one another and get facts from reliable sources, such as a health professional or a reputable health agency’s website. Partners can read about what their loved one with MS is going through, helping them to understand and empathize with his or her challenges.
Couples may need to reorient themselves to a different kind of intimacy, broadening their definition of what intimacy can be for them. Intimacy is not limited to the physical act of intercourse, and when redefining intimacy, couples should stress the importance and pleasure of touching and feeling. Couples need to explore other ways of being sensual, which includes
cuddling and holding
Sexual difficulties are not unique to individuals with MS, and many of those without a chronic illness have similar intimacy issues. Life’s transitions can also affect intimacy. These include childbirth, parenthood, menopause, retirement, and aging, among others. Changing expectations about intimacy is a big transition and communication is the key to finding solutions.
Couples need to develop a comfortable sexual style that is enjoyed by both partners. This takes time and can be
frustrating, but it is a gradual process, and individuals may be helped though the coaching of a professional. Being creative, patient, and having a mutual respect for one another are important, along with keeping a sense of humor when things don’t go exactly as planned.
“Sensate Focus” is an effective exercise developed several years ago by Masters and Johnson to reduce performance anxiety. When used by sex therapists for this purpose, Sensate Focus follows a very rigid protocol of step-by-step exercises, directing partners to explore each other’s bodies without the pressure to perform. Sexual intercourse is strictly forbidden during initial phases of the exercise.
For individuals with MS who have experienced changes in sensation (including hyperesthesia, dysesthesia, and hypoesthesia, as mentioned earlier), Sensate Focus may be used in a more creative manner. By removing the strict boundaries set for reducing performance anxiety, this exercise can help couples explore and discover new erogenous zones when sensation has changed or been lost in traditional pleasure zones.
To perform sensate focus for this latter purpose, couples should choose a quiet evening and surround themselves with relaxing things, such as low lighting, flowers, and music. After undressing, partners take turns to massage and explore each other’s bodies, using massage oil. This is done in a progressive manner, going from head to toe, serving to enhance sensuality.
In addition to this exercise, sex therapists may recommend a number of other ideas to boost libido. Trying out different positions can increase comfort and add excitement, as well as using accessories that may be ordered by mail. Reading romantic books or watching provocative movies can also arouse interest.
The key is to broaden the definition of intimacy, creating new sensual pleasures, and sharing fantasies. Exploring these fantasies is very important. Play acting – or acting out a different role – is also encouraged. Fortunately, many resources are now available for additional information and to order accessories, books, and videos. Through websites, toll-free phone numbers, and plain wrappers, adults (18 and older) may discreetly obtain these personal products through the mail, without having to visit an adult book store.
Two suppliers that are both discreet and knowledgeable are:
- Sinclair Intimacy Institute at
(800) 955-0888 or www.bettersex.com
- Good Vibrations at (800) 289-8423
Sinclair has an array of products to assist with and enhance intimacy. Examples include the “pelvic bar bell” and the “Liberator.” The pelvic bar bell is for women to strengthen their pelvic muscle, which is particularly helpful for individuals with MS who may have lost muscle tone. The bar bell promotes muscle tone and can even help with controlling incontinence. The Liberator is a foam rubber wedge-and-ramp type of device that can make positions easier for older people or for individuals with disabilities, enhancing one’s level of comfort. This cushion eases back strain while providing firm and comfortable support. Information about
the Liberator may also be found at www.liberatorshapes.com.
Good Vibrations was founded by a woman, Joani Blank, who has written several books. Their products are specialized and as the name implies, they do carry vibrators (which can be a valuable resource for some individuals with MS), along with a full line of items. The operators who answer the phone are well trained and can help with individuals who have special needs because of a disability.
In addition to lubrications such as KY® and Astroglide®, some therapists recommend an arousal oil for women known as “Zestra®.” Clients appear to respond well to Zestra, which is formulated to enhance female pleasure and sensation. According to studies, it seems to be of help. For more information, readers may call (877) 493-7872 or go to www.zestraforwomen.com. Zestra may also be available on some pharmacy websites, including www.walgreens.com.
Several books and other resources are available on the topic of intimacy and life changes. Please note that these contain sexually explicit material for adults only. These resources include:
- Videos recommended for women,
created by Candida Royalle and marketed by Femme Productions; highly respected by sex therapists, Candida Royalle is unique in that she was the first to create videos specifically for women; for more information, call (800) 456-5683 or go to www.royalle.com
- Romance/fantasy books authored by a woman with the pen name, “Zane,” and written for women mostly of African/ American heritage; these may be ordered by calling (301) 218-4353 or by logging onto http://authors.simonandschuster.com/Zane/269527; Zane’s books are also available through the book stores listed at the end.
- Enabling Romance: A Guide to Love, Sex, and Relationships for People with Disabilities and the People Who Care about Them, written by Ken Kroll and Erica Levy Klein
- The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disability, Chronic Pain and Illness, written by Cory Silverburg, et al
- Still Doing It: Women and Men over Sixty Write about their Sexuality,
written by Joani Blank
All of the books listed may be purchased through different book suppliers, including Amazon at www.amazon.com and Barnes and Noble at www.bn.com. Searches may be done to find other similar books available. Books may also be ordered over the phone by calling Barnes and Noble at (800) 843-2665. The first book listed, Enabling Romance, is also available through MSAA’s Lending Library. Please see p. 48 for ordering instructions.
For More Information
For more information on social issues, relationships, and coping with MS, the Conill Institute for Chronic Illness may be reached by calling (215) 746-7267 or logging onto www.conillinst.org. In addition to phone support to anyone across the country, the institute provides separate programs (within the Philadelphia and surrounding areas) for doctors and for individuals with chronic illness, including monthly educational meetings and half-day programs that may be tailored to any related group or topic.
For information on relationships and intimacy, Dr. Sabitha Pillai-Friedman at the Institute for Sex Therapy with the Council for Relationships in Philadelphia may be reached by calling (215) 893-6517. The Institute for Sex Therapy uses a team approach for individual and couple therapy, including a urologist, nurse practitioner (with a PhD in human sexuality), and several sex therapists on staff. Anyone throughout the United States may call for phone support; individuals within the Philadelphia area may also call for phone support or to make an appointment.
Readers may also contact MSAA at (800) 532-7667 to speak with a consultant.
Intimacy and Pregnancy
Having a baby is another one of life’s changes that impacts intimacy. In addition to post partum depression and anxiety, a new mother also experiences a drop in hormone levels after giving birth, particularly if nursing. This drop in estrogen and testosterone – hormones that increase libido and arousal – can cause a loss in sex drive. Additionally, new mothers need time to get used to being intimate again. While some doctors recommend waiting only six weeks after giving birth, many women need three to four months to heal before they may be intimate without discomfort.
Childbirth also means stress and fatigue for both partners, as they realize the time and energy needed to care for a baby, the many extra chores, and the sleepless nights. Intimacy is even further challenged as the roles of a mother and father are mixed with those of being intimate lovers. Much relates to how someone was raised, forming his or her scripts and messages according to how his or her family viewed parenthood. Some think that the mother should be pure and asexual.
This is a tough transition for many couples. Getting information from a reliable source or through a therapist can be helpful with adjusting to the stress and changes involved with having a baby.
Dr. Sabitha Pillai-Friedman specializes in helping couples and individuals adjust to life transitions such as having a baby. She teaches a seven-week class on “Bonding after Baby,” which addresses relationship issues for first-time parents. Readers may call her at (215) 893-6517 to ask for more information and literature, or to register for the class if residing in the Philadelphia area.