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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

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During those first critical days after you have been diagnosed with a chronic illness are important.  Your life is not over—the prophets have been dead for many centuries, so who is telling you that your life is over.  You still have a life. 


The Emotional Implications of Chronic Illness
On MHE Patients and Their Families

Ronni Michelson, MSW, LSW and Susan Wynn


Disclaimer: This article is in no way a substitute for professional diagnosis and treatment, but rather an overview of a subject which may be impacting some of our readers. As stated in the article, please seek out a mental health professional and/or medical doctor with any questions or concerns.

As sisters who have gone through numerous life crises together, we have seen the effects of illness, both acute and chronic, on family dynamics. During the last few years, Multiple Hereditary Exostoses has become an integral part of our lives, and we would like to share some of our observations and thoughts on the matter. MHE affects more than the bones. It can also impact the emotional well being of the person who has it, as well as the patient's family.

As we all know, no one passes through life's journey unscathed, and for the most part we manage to cope with the stress and/or anxiety as situations present themselves. However, chronic illness and pain present their own problems, and MHE itself carries with it additional challenges.

As MHE is a rare, orphan disease, many in the health care professions are just beginning to learn about the specifics of this disorder. Some families have reported experiences where doctors were unable to successfully diagnose and/or treat some of the ancillary components of this disorder (i.e., fatigue, poor sleep habits, chronic and/or unexplained pain, etc.). As the parent of a child with MHE, and from my experience in talking with other families, it appears that a holistic approach taken to care for the whole individual is undermined by treatment being fragmented. This is because the patient may be seen by many specialists looking at symptoms from very different perspectives, and a correlation is not always made. This can be frustrating for many patients and families, since it tends to invalidate the very real symptoms that are being experienced.

Multiple members of a household may have the disease and depending on which member requires medical attention, is having pain, or requires surgery, family dynamics may be in a constant state of flux. A parent may be the caregiver one day, and a patient the next. Emotional responses to the disease are diverse and will vary depending upon attitude, growth and development, background and lifestyle. The capacity and willingness to understand the impact of the disease not only on the patient but also on each member of the family is vital to helping the family function as a unit.


A lifetime challenged by pain, fatigue, surgery, and even restrictions on one's lifestyle can be devastating and may result in depression. It is important to understand that each family member responds to this illness in different ways. There is no one way to respond or feel in handling stress (for example, the husband who has difficulty discussing the disease, the mom who cries often, the sibling who behaves in an angry manner, the child who feels guilty for "causing" these problems). While family members may not see eye to eye at any one time, they need to persevere with respect for each other, allowing for open and supportive communication.

There are many coping mechanisms that can be utilized to deal with increased stress levels. Often a combination of techniques will be the most effective approach. The following are just a few suggestions:

* Faith and spirituality
* Support Groups
* Drawing, journaling, and other expressive endeavors
* Relaxation techniques, such as guided imagery, deep breathing, meditation, aromatherapy
* Humor! If you've lost your smile, try to find it again. Laughter may not be the best medicine, but it certainly is good medicine!
* Adopt a healthy lifestyle, including mild exercise (remember to check with your physician before starting any new exercise program) and proper diet. Try to cut back on unhealthy habits (alcohol, caffeine, smoking, and a sedentary life style can actually stress the body and lead to increased, rather than decreased, tension).
* Restructure your priorities and add some pleasurable events into your day or week. While getting out to see a movie, or relaxing with a good book won't solve your problems, taking some time for yourself may just help you handle them a little better.
* If necessary, seek professional help. There are many options that your health care provider can discuss with you to help manage acute stress, anxiety, and/or depression.

There are times when the impact of MHE gets to the point where medical intervention is warranted, and where self-help measures are not enough, While that determination can be difficult, there are some common signs to look for in adults, children, and adolescents:
* Persistent sad, "empty", or anxious mood
* Feelings of hopelessness, pessimism
* Feelings of guilt, worthlessness, helplessness
* Loss of interest or pleasure in ordinary activities
* Decreased energy, fatigue
* Difficulty in concentrating, remembering, and making decisions
* Sleep disorders including insomnia, oversleeping, or early morning awakening
* Irritability or restlessness
* Recurring thoughts of death or suicide
* Persistent physical symptoms that don't respond to treatment, including headaches, digestive disorders, and chronic pain.

In addition, children and adolescents may experience some of these symptoms:
* Frequent vague, non-specific physical complaints such as headache, muscle aches, stomach aches or tiredness
* Frequent absences from or poor performance in school
* Talk of or efforts to run away from home
* Outbursts of shouting, complaining, unexplained irritability, or crying; increased anger or hostility
* Lack of interest in playing with friends, social isolation, poor communication; difficulty with relationships
* Extreme sensitivity to rejection or failure


If there is any doubt or questions, please seek medical/professional help. There are many treatments available today to effectively deal with major depressive and/or anxiety disorders.

Note: Some of the symptoms of MHE, such as fatigue, chronic pain, sleep disorders, etc. mimic or can be identical to those of major depression. Therefore it is even more important to seek out professional help and try to find physicians familiar with MHE and to educate and provide information to mental health professionals, so that the etiology or origin of the problem is correctly diagnosed. Lifestyle modifications may be needed to manage chronic symptoms such as chronic fatigue, in order to maximize potential and limit unreasonable expectations that may in fact lead to a depressive episode.