Let’s Talk About Mental Health and Rare Disease

When you have a rare disease, you know that the way it effects your life goes far beyond the symptoms listed on WebMd. It riddles through plans for weekend, your ability to go on that business trip out of state, your self perception, and your ability to join in on that adventure park birthday party that all your friends will be at. Somatic symptoms are undoubtedly a major piece of the equation, but you cannot separate the body and mind when you talk about health. Rare diseases effect not only your liver or your joints but the way you navigate the world. The stress and anxieties resulting from damaged health take a toll on the person and the family in a way that goes unexpressed in discussion about the physical symptoms of disease.
I don’t think it will surprise anybody with a connection to the rare disease community to learn the prevalence of mental health disorders is significantly higher for those with rare diseases. 69% of patients report depression and 82% report anxiety and stress, versus 17% reported by the general population of the two together. This relationship is tied together by many factors, including the direct effect of physical incapacity on the mind, the way it challenges and limits daily life, the frustration of not being properly understood, time spent with doctors and raising funds, stresses and anxieties it causes about ones future, appearance, and finances; and a whole host of details and side notes that do not feel so minor when its you.

But It’s Not Just in Your Head

However, the relationship is complicated. Many rare disease patients know the frustration of being misdiagnosed with solely psychosomatic disorders and having the realness of their physical symptoms misunderstood or not heard. In a way, the effect disease has on mental health can be a distraction from the underlying cause of the mental health issues. Rare diseases are already frequently under diagnosed and misunderstood because of their niche and unusual symptoms. Additionally, many rare diseases have symptoms of psychiatric diseases as well, leading doctors to miss the wider picture of their disease and misdiagnose them with only the mental health component.
Thus there are two important sides to the rare disease/mental health relationship: the need to separate the two to recognize the rare disease as valid and not just a manifestation in the patient’s head and the prevalence of mental health issues associated with the rare diseases.

What About Rare Diseases Causes Mental Health Issues?


Going Undiagnosed

One trigger of mental health issues is the prevalence of going undiagnosed and being misunderstood. Rare diseases often have rare and unusual patterns of symptoms and will leave patients searching for answers for years. This causes frustration and confusion as the disease continues to manifest without treatment.
When the way you feel is denied and you cannot communicate that something bigger lurks beneath, there is a natural feeling of repression, isolation, and hopelessness. A fundamental human desire is to express oneself and when that expression is labeled as your own faulty perception or worse, a lie, the resulting stress can be overwhelming. A patient may feel undermined and targeted, labeled with psychosomatic issues rather than real pain.  Nobody likes being told what they feel is just in their head.
Even if a patient is believed, being undiagnosed means patients cannot put a name to the disease and can make the patient experience much more mentally taxing. Often symptoms come in peculiar and otherwise disconnected patterns, and it can be hard to link together the many manifestations of disease. The minute ways a diseases wide reaching effects can display themselves can be unpleasant and outside one’s control.

Being Diagnosed But Still Misunderstood

Further, even with a diagnosis, the feelings of being misunderstood often persist. Friends and families may not be conscious or sensitive to particular needs or may easily lose sight of them. A person may get easily tired out and find their family pushing their limits on a vacation, or they be particularly sensitive to heat when their friends want to stay on the beach. On a greater level, rare diseases largely lack therapies and attention from pharmaceutical companies and patients have to tirelessly fight for funding, research, care, and therapies. Even after all of those emails and appointments and fundraisers and events, there often remains a frustration at the slowness and limits to what can really be achieved quickly. Therapies for rare diseases are in no way common or easy and often require constant maintenance and attention. The community is small, few people’s experience with diseases look the same, and the experience is very distinct to the individual.


It Steals Your Time

The life of somebody with a rare disease is spent passing time focusing on one’s health care needs. It can mean time spent at home with headaches or lack of sleep. It is spent frequenting hospitals and doctors, inextricably linked to health care services. These visits often take time out of school, work, or socializing, being replaced by passing hours or weeks in sterile hospital settings around others who are similarly there for difficult reasons. A hospital environment is not an uplifting one; often there’s a heaviness that lingers on in the day.
Needing to miss chunks of regular life is taxing, tiring, and isolating. You feel the time taken from your day when you need to drive hours to regularly visit physicians and clinics. Patients also must coordinate their medical schedule between various clinics and therapies, creating complicated schedules that involve doctors outside their town or region. This means a patient’s schedule often is centered around appointments.
This isn’t an easy balance. It can make children feel like outsiders, fall behind in school they miss out on and miss the social life they have cannot participate in. This important time management can create stress about maintaining job hours and not being able to take raises if it takes too much time and energy. Patients with rare diseases often need to fit in a whole other realm of life.

Rare Disease Changes Your Social Life

Rare diseases can also affect how patients can spend their social time and how they feel throughout. Having struggles that those around aren’t dealing with can make it hard to feel connected and can prohibit joining in group activities. Some must rely on others for rides or cannot go without company to favorite activities like hikes in the woods or trips to the lake. Losing this freedom is undeniably cramping and frustrating. It can make going out tiresome and complicated.  Researchers found the more disruptions patients had to their daily life by their disease, the more anxiety and pain they exhibit.
A rare diagnosis can also affect one’s social experience by causing counter productive coping strategies, causing vicious circles of stress reinforcing itself. In another article, I will discuss the positive coping strategies such as acceptance, self-encouragement, and distraction which can instead help patients through their struggle.

Rare Disease Changes Your Future Prospects

Either in uncertainty of diagnosis or with clarity, disease can make people uncertain of the future. Feeling you do not have the liberty to grow old like you may wish can limit how you live your life today. It can be hard to be positive about long term goals when one feels a cloud hanging over them.

When Rare Disease Directly Causes Mental Issues

Mental health issues aren’t always an effect of the life circumstances caused by rare diseases but rather a direct physiological effect of the disease. For example, studies show that patients with recurrent abdominal pain show the exact symptoms of generalized anxiety disorder both in the more mental and somatic complaints. Chronic pain is said to rewire the brain circuiting to connect pain and emotion more intimately. This heightens the pain related symptoms even further into a vicious circle of stress. This can contribute to misdiagnosis as it can be misinterpreted as being the only problem, rather than just a piece of it.
This is not supposed to be a negative piece to state miseries but rather to articulate the complex emotional state that rare disease can leave patients in. Rare disease is complex and holistic, varying on the disease and patient. It can touch all parts of life. Friends and family must remember what patients are going through can be more taxing than what’s seen at a glance. It is embedded into how one lives their life.

What are your thoughts on the way rare disease effects mental health? Share your stories, thoughts, and hopes with the Patient Worthy community!

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