Explaining Muscular Dystrophy to Your Family and Friends

Unless personally affected by muscular dystrophy, no one can fully come close to understanding it or understanding what it is like to deal with. Explaining muscular dystrophy to your friends and family will take time, and you might need to remind some people of what you’re going through. It will make a big impact on your emotional state if you determine that your friends and family members are there for you. The lack of public knowledge about muscular dystrophy is tough for the family dealing with the daily ordeal of the disease. To explain muscular dystrophy, a person must grasp on what muscular dystrophy is. How does it affect the patient, their family, and friends? To be able to empathize with their struggles, one should know the causes and symptoms which affect the patient’s daily activities and how they deal with their battles. Explaining muscular dystrophy to your friends and family will play a vital role in your acceptance of your current situation.

About muscular dystrophy

Certain genes are involved that protect the fibers of the muscles from damage. If one of these genes is defective, muscular dystrophy occurs. There are nine major forms of muscular dystrophy:

• Myotonic  – It is the most well-known form of muscular dystrophy. It is associated with prolonged stiffening and spasms of the muscles after use.

• Duchenne – This is common in male children. It causes muscle weakening where in most cases, the arms, spine, and legs become deformed.

• Becker – It is a milder form of muscular dystrophy. Patients usually live further into adulthood.

• Limb-girdle – It is a form of muscular dystrophy that begins in the hip area and eventually moves to shoulders, arms, and legs.

• Facioscapulohumeral  – This refers to the muscles responsible for the movement of the face, shoulder blades, and upper arms. It ranges from very mild to completely disabling.

• Congenital – It is the shortening of muscles that cause joint problems which are present at birth.

• Oculopharyngeal – This one causes weakening of the eyes and face muscles which may lead to choking and difficulty in swallowing.

• Distal – It is a less severe form of muscular dystrophy characterized by weakening and wasting of extremities including the forearms, hands, lower legs, and feet.

• Emery-Dreifuss – This is a very rare form of muscular dystrophy. The disease gradually progresses and causes muscle weakness. Though it’s a rare type, there is a possibility of it to progress into a life-threatening heart problem.

Since there’s no known cure for muscular dystrophy as of today, MD patients have to rely on treatment and therapies in managing their symptoms. This helps in slowing the progress of the disease and improving their quality of life. Muscular dystrophy is not as well-known as diseases like cancer. Awareness and informational programs and funding and research for muscular dystrophy will help the patient and the family on how to best cope with the condition.

Support systems

Getting support from your family members and friends is your strength. You are in a stage of shifting from a normal life to a more challenging one. It’s easy to get dumbfounded with the diagnosis. Along the journey, it is possible that fear and disappointment will reign. Hence, surrounding yourself with people who understand will make a difference in your ordeal.

For parents:

As parents, all you ever want is to protect your children at any cost. Symptoms of muscular dystrophy will take a toll on your optimism. Negativity sets it, and you may begin to lose hope in battling this disease. If you are a parent with muscular dystrophy, the fear of the 50% chance of passing it to your children haunts you. It’s an overwhelming journey that you never planned for your children. As you deal with muscular dystrophy, you experience the symptoms of the disease and how to get through on a daily basis. But with the possibility of transferring it to your children, the feeling is gruesome. You have to train your mind to think that you are not alone in this journey. Talk to parents who experienced the same struggles. Be as accepting and caring for your child as you possibly can.

For grandparents: 

In your senior years, all you have dreamt of is holding your grandkids, playing with them, and spoiling them. Showing your undivided attention whenever they are around and seeing them enjoying life to the fullest will brighten up your day. Being a grandparent of a patient diagnosed with muscular dystrophy would definitely change your perspective on life and how to handle this situation. You want to support your child without being overbearing. Decisions are not yours to make anymore. You may find yourself in an awkward position due to the delicate issues of mixed emotions. You, as a grandparent, play an important role in their lives. Your guidance and open arms will bring back confidence to your family. You need to reassure them that life can continue happily.

For siblings:

A diagnosis of muscular dystrophy would somehow affect the family dynamic. Most of the time, the focus is shifted to the patient, and the other siblings are left unattended. Parents should never forget about the other siblings’ needs as they are also suffering from the drastic changes in their lives caused by their sibling's muscular dystrophy diagnosis. The family may seek professional help in maintaining the balance from the diagnosed child to the healthy ones. It is imperative, though it’s a challenge, that you will be there to show your unconditional support to your diagnosed brother or sister. This is the best time to express your love.

For friends and relatives:

For friends and relatives, it may be difficult to balance between offering a genuine support you have for the diagnosed family and respecting their privacy. Though it’s challenging, don’t let that hinder you from offering whatever you can. If you are not part of the immediate family, you can support them in a way where you let them feel the normalcy of life. That’s one of the things that the diagnosed person with muscular dystrophy wants - to live life as normal as possible.

Final thoughts

You have to keep an open mind that after explaining muscular dystrophy to your friends and family, a reaction will vary from person to person. There may be some family members and friends who will take this change as a very overwhelming experience. Be patient as well, and in due time, they will accept and embrace your situation. In this new world that you are in right now, there will be doubts, lots of tears, and disappointments. But believe in yourself that you will find joy, and you will smile again. Explaining muscular dystrophy to your friends and family members will be your way to unload the burden you are carrying. Every single person on this planet has their own story. For a person or family dealing with muscular dystrophy, they need care and empathy for their situation. By being surrounded with amazing and wonderful family and friends, eventually, you’ll find peace and acceptance. Though full of uncertainty, just take it one step at a time. Later on, as you’ve fully understood your situation, you’ll find inner peace and a rewarding life ahead.