Dysautonomia disorders can be extremely difficult to live with and can not only take a physical toll, but also an emotional toll in someone’s life. Sometimes, it can leave partners, friends, and families of people with a diagnosis of dysautonomia lost as they watch their loved one spiral and suffer not knowing what to do. If you have someone in your life experiencing a type of dysautonomia, there are a number of ways you can support them. This article outlines a few of the ways you can do this.
Transforming one’s thoughts will ultimately result in positive actions and behaviors in difficult moments. — Greta Gleissner LCSW
Talk to one another
It is important that you continue to keep the lines of communication open. Sometimes, when people are having a hard time, they may tend to withdraw and even push people away. It is important that you don’t allow them to do this as it will leave them with no support. This involves more than simply talking to them about their illness. You also need to:
- Be there when they need someone to talk to, listen to their concerns and show empathy.
- Be very careful in how you respond to their concerns and symptoms. One of the problems with dysautonomia is that it is inherently difficult to diagnose. The symptoms are not always physically obvious. Often times, people feel that it is “in their head”. If you try to suggest that you know exactly how that person is feeling, they are likely to feel invalidated and demoralized. They may see you as someone who does not take them seriously. Try to focus more on expressing how difficult you realize it must be for them, rather than telling them you know how it feels to be tired or feel sick.
- Show interest
- Actually, take in the information they are telling you about the illness and ask questions. It is important that you have a true understanding of what it is, the treatment, symptoms, side effects and long-term outcomes in order to provide support. Taking an interest in yourself, and even suggesting that you would do some research together, might be helpful too. Use your loved one as a guide here. However, they may be overwhelmed with the information they have received so far and may not be ready yet to seek out for more.
Obviously, what makes it different from psychodynamic, insight-oriented, past-oriented approaches is a focus on the present: What are you thinking about right now? — Robert Taibbi L.C.S.W.
Be aware that experiencing a dysautonomia can place a lot of limitations on someone’s life. As we mentioned above, your loved one may become overwhelmed and even go through a grieving process when they grieve the loss of their previous healthy life. Be patient during this time. They are unlikely to be able to push themselves physically like before. This will likely impact their social, household and work commitments. Being aware of this, and the fact that it is not simply “laziness” or them trying to be difficult, is very important.
Look after yourself
We’ve all heard it before, you can’t be of any help to someone if you are not okay yourself. This is true. When supporting someone through a difficult time, you also need to ensure you have a good support system around yourself as well as ways that you can “de-stress”. Things that can help with this are joining a support group, making sure you keep up with your own hobbies and interests, leading a healthy life and having some time for yourself personally.
In spite of diligently maintained thoughts that flying is safe, emotion does not follow suit. — Tom Bunn L.C.S.W.
Know that they are likely to not only be grieving the loss of what they used to be able to do, but they may also feel guilty about not being able to do these things. Check in with them if you notice they may be doing too much. Let them know that it is okay to take a step back and have a rest. When this happens and you have the capacity yourself, see if you can do some of these tasks for them such as doing extra chores around the home for your partner or dropping off some groceries to a friend.
Most importantly, tell them you love them often. They will feel as though they have changed. But, knowing that you still accept and love them regardless of their illness will be the best support you can possibly provide.
For more information on supporting someone with dysautonomia please see the links below.