People with muscular dystrophy (MD), can live a fulfilled active life, filled with love and sex, too.
Muscular Dystrophy (MD) is a name for a group of rare diseases (more than thirty), with similar symptoms, characterized by weakening of muscles. The disease is debilitating for those suffering from it, for some, it is more while for others it could be less debilitating. Most of these conditions touch people at quite a young age. For many it will cut their life expectancy short, but not for all. It causes anxiety and depression as it progresses slowly. MD is gender discriminating, with boys or men being more prone to it. It is agonizing to progress from being a healthy and active individual to being physically impaired. Since most of the conditions are genetic or even poorly understood, modern medicine can delay the symptoms, but can rarely prevent or treat them fully (1).
The best strategy for living with MD is to give it a good fight. Learn to combat the emotional agony, make everyday count. Learn to appreciate each moment, value what is on hand today, rather than think about what may be lost tomorrow. In the most chronic condition, it is not just a disease that is handicapping, but in more than fifty percent of cases, it is depression, anxiety and other preventable mental problems that far deteriorate things (2).
Today's medicine and muscular dystrophy
What today’s medicine is offering is no way a predictor of future. Currently, most drugs only slow down the inflammation process and degradation of muscles. However, science is already focusing on newer therapies for muscular development. It could be newer drugs, gene therapy, or stem cell therapy (3). Already huge strides are being made, and things may change any day for many of these conditions. It is not to give a false hope; all this is realistic. Science has already cured many rare diseases.
Some people may also outlive any medical prediction, and it may be you or someone you know to be suffering from MD. Stephen Hawkins is just an example; he was diagnosed with a rare handicapping disease called amyotrophic lateral sclerosis (ALS), with a prognosis of few years of life. Yes, most people with that condition only survive 2 to 3 years on average. Stephen emerged as a long time survivor and went on to make a name for himself. Moreover, he was not wealthy and famous at the time of diagnosis, with being just 21 years old (4). So anyone with MD has much better chances today for a successful or at least a beautiful life. It is all in the hands of oneself; one can either give up or fight.
The mantra for thriving with MD
So what is the mantra for thriving and living happily with MD? Well, it is simple; stay positive and motivated, fight the disease, learn about living with MD from others with the similar condition, socialize and get out of your isolation, and of course, make love.
In this blog, we are going to touch this most neglected and sensitive topic for people growing up with MD. Intimacy with someone is essential for psychological well-being. Moreover, technology is helping a lot in this area. Today finding new friends, socializing and developing an intimate relationship with any physical disability is not a problem. There are so many social platforms and dedicated websites, meeting clubs, organizations, that can help you to find the right person. It is realistic, necessary, yet so many individuals with MD continue to live in pain and fail to try and develop necessary social skills (5).
Things related to intimate and sexual life are made worse due to many myths around the sex and MD. This article tries to bust some of those widespread misunderstandings and shed better light on the topic (6).
People with MD are not interested in sex, and they do not feel anything over there – It is not acceptable that most people, even close friends and family members believe in this. Most of the misunderstanding comes because people have read lots about those who had spinal trauma. However, MD is very different disease condition. It is not the loss of functioning of nerves (though few exceptions are there), as the name of the disease says, in most cases, it is dystrophy of skeletal muscles. However, sensory and involuntary functions are mostly well preserved. Sex has lots to do with emotions, sensations and involuntary muscles (especially those in sex organs and blood vessels supplying them). It is rare in MD to have any sensory problems. Yes, sex involves lots of voluntary movements too. However, with practice, one can learn to overcome this limitation,as it has been said “When life hands you a lemon, make lemonade,” in similar fashion learn to use your existing capabilities to the maximum.Many people are living with MD, whom others find interesting, energetic, and attractive.
There is a gradual loss in sexual feelings, in those suffering from MD – Gradual loss in sexual power is common in all people, as they age, most men and women have less interest when compared to 20s, and people suffering from MD are no different. However, sex does have lots to do with your general health condition. It is a bit demanding physically, but these barriers can be overcome with the help of practice, choosing the right place and position to make love. Further one may also seek medical treatment for improved sexual functions, after all, who says that drugs that are used for otherwise healthy people cannot be used in MD to improve sexual performance. For good intimate life, it is important to stay active both physically and sexually. Sex performance has lots to do with human psychology, thus getting psychological help may be an option.
Suppressing sexual and romantic feelings saves from disappointment – Surely not, it does more harm than good. Family members often say that, because they are worried about a person getting hurt and disappointed. However, then take the example of so many individuals who have found the right partner for themselves. Many are happily married for years. The family needs to be supportive and understanding towards the sexual requirements of a person. Just take inspiration from the story of Francine Desrosiers, she has been happily married for most of her life with Jean Emond, they are together for more than 30 years. She is suffering from MD, but Jean is not. That breaks the another myth that people with disabilities are not attractive. The lasting relation is not just about sexual intercourse; it is about listening to each other, love and affection(7).
Sex is essential for good health and overcoming loneliness – Abstinence causes no physical harm to the body. Further, one does not necessarily need to look for sexual relations to overcome loneliness. So many adults practice celibacy, yet they are quite successful and contented with their lives. To overcome loneliness, one may make just good friends. In the 21st century,the internet is a blessing in such cases. Socializing and finding friends through online platforms is a good and practicable option. Disabled people have difficulty in socializing in the real world, but in a virtual world that is easier for most of them. Quite often such friendships become more than just some virtual relations. So you got to focus on what you have rather than what you do not. Plan your life; no one is going to do it for you. Create your social plan, find friends, be positive, who knows that one of those friendships may turn into a relationship of a lifetime. Take care of yourself, try to look your best. Don’t suppress your sexual feelings, at the same time understand that intimacy is not only about sexual intercourse.
1. Choices NHS. Muscular dystrophy - Types - NHS Choices [Internet]. 2016 [cited 2017 Jul 30]. Available from: http://www.nhs.uk/Conditions/Muscular-dystrophy/Pages/Symptoms.aspx
2. Latimer R, Street N, Conway KC, James K, Cunniff C, Oleszek J, et al. Secondary Conditions Among Males With Duchenne or Becker Muscular Dystrophy. J Child Neurol. 2017 Jun 1;32(7):663–70.
3. Uezumi A, Fukada S. Toward Regenerative Medicine for Muscular Dystrophies. In: Translational Research in Muscular Dystrophy [Internet]. Springer, Tokyo; 2016 [cited 2017 Jul 30]. p. 103–22. Available from: https://link.springer.com/chapter/10.1007/978-4-431-55678-7_7
4. Harmon K, Harmon K. How Has Stephen Hawking Lived Past 70 with ALS? [Internet]. Scientific American. [cited 2017 Jul 30]. Available from: https://www.scientificamerican.com/article/stephen-hawking-als/
5. Rahbek J, Werge B, Madsen A, Marquardt J, Steffensen BF, Jeppesen J. Adult life with Duchenne muscular dystrophy: Observations among an emerging and unforeseen patient population. PediatrRehabil. 2005 Jan 1;8(1):17–28.
6. Common Myths | Muscular Dystrophy Association of New Zealand [Internet]. [cited 2017 Jul 30]. Available from: http://www.mda.org.nz/information/sexuality/common-myths/
7. LASTING LOVE AND DISABILITY – A VALENTINE STORY [Internet]. [cited 2017 Jul 30]. Available from: http://www.muscle.ca/lasting-love-and-disability-a-valentine-story/