With an autoimmune disorder, something within our body causes an abnormal reaction in our immune system, in essence, causing our immune system to fight the body itself. — Linda Walter LCSW
The challenge of living with a sick person who depends on you for their care is very stressful such as in the case of patients with dysautonomia. These patients suffer from a number of symptoms which can greatly affect or even impair their activities of daily living. It can include but is not limited to orthostatic hypotension or a sudden drop in blood pressure, and incontinence or sexual dysfunction. One of the most common causes of autonomic dysfunction is actually diabetes mellitus.
Be educated about the signs and symptoms.
It is vital to be informed on what to watch out for when you have a serious disease. In that way, you know when it is urgent to seek help in emergency situations and most importantly how to manage it to avoid further complications. For example, if they suffer from orthostatic hypotension, instruct them not to get up from bed abruptly. Tell them to slowly rise from a lying to a sitting position. Sit for a few minutes and dangle legs. Assess if they are feeling dizzy or not. If they believe they are stable, they must gradually rise from bed. Also, it is better to use assistive devices like canes or walkers to prevent fall. Due issues in digestion, eating small frequent meals are also beneficial.
Manage underlying factors and prevent complications.
As previously mentioned, autonomic dysfunction can also be due to diabetes mellitus. Therefore, in order to effectively manage the signs and symptoms, the root cause must be known. Provide education about diabetes mellitus and explain to them how it relates to their condition. Educate them about the importance of lifestyle modification such as avoiding foods high in sugar and incorporating daily exercise.
Desperation is felt for those who suffer from chronic health issue. Desperate for a solution, desperate to not wake up tomorrow with a flare up. — Danielle Swimm LCPC
Provide a strong support system.
In any forms of disease and stressful situations, a consistent and compassionate source of strength is the people who genuinely care and provide comfort. They are undergoing not only physical struggles but emotional and psychological as well. With the access of social media, they have the tendency to resort to talking to people who can relate to them. Although there are legitimate online groups, there are also bullies in the stranger chat room, who instead of providing support might just take advantage of the situation.
A great deal of stress is faced not only by the patient, but the people around them such as their family, friends, and relatives. It is helpful that they should be provided with proper sources of education and support group that can help them through this challenging time. It might take some time, require tons of patience and can even affect the finances. This will impact the household and can add to the stress. It is important that everyone in the household should be transparent regarding expectations and how significant their role and cooperation is in these trying periods. It may not be easy. But, it is also temporary. For as long as you have each other, no trial can defeat you, not even dysautonomia.
Many people with emotional and physical pain turn their lives around when they become able to accept their experience as it is, while simultaneously working to change what they can control. — Deborah Barrett Ph.D., LCSW