Dysautonomia disorders can be crippling and place numerous restrictions on your life. Understandably, living with a dysautonomia can be exhausting, confusing, frustrating and even demoralizing. It can often lead to mental health concerns such as anxiety or depression. Following diagnosis, often, you are left feeling overwhelmed and as though life will never be normal again.
Hang in there though! Although it may feel like everything is falling apart right now, it won’t feel like this forever. There are a number of ways that you can live (and enjoy!) your life without letting this illness rule it. We have collected a few of these here for you in this article.
Take some time
The initial period leading up to and following diagnosis can be confusing and overwhelming. Doctors aren’t always the best at explaining things in normal language. In addition, having an illness that is still being studied extensively makes it even more difficult. Make sure to ask questions through this time as they come up. Then, take some time to process the information you have been given before seeking out for more.
Understand the diagnosis and illness
Once you feel ready and have taken the time to process the information you have been given, seek out further information from reliable medical sources. Being able to live a rewarding life with dysautonomia means having a full understanding of your capacities, strengths and limitations. When you do have a clear head, spend some time writing down questions for your next specialist appointment. It can be a helpful way to ensure that you have all the information you are after.
Accept the illness
I know in some ways this might come across as “admitting defeat”. However, the unfortunate truth is that dysautonomia is not curable. So what is the point in fighting something that you cannot change? All this will do is exhaust you. Accepting the illness won’t make it go away, but it can reduce a great deal of your inner stress and help you work on your strengths. Without accepting your limitations, you cannot set realistic goals. Through accepting the illness, you are able to truly consider your strengths, set and achieve the goals in line with these. This acceptance is better than continuing to fight the illness and constantly disappointing yourself that you can’t do the things you used to do.
Know that you are not the dysautonomia
The ongoing stress that chronic illnesses like dysautonomia causes can bring about some pretty negative thoughts. Let’s be honest. We are not the nicest people to ourselves sometimes. These negative thoughts might be something like “I’m never going to be able to enjoy life again.” Unfortunately these types of thoughts have a lot of power in our minds and it is easy to identify with them. It is important to acknowledge the thoughts and understand that there is a reason as to why you are having them. You may have had a particularly difficult day, or might be in a lot of pain at the time. However, once you have acknowledged this thought, separate yourself from it. Know that you are an entire person with your own passions, personality, friends, family, hobbies, interests and memories outside of the dysautonomia. It does not define you. It may have a big impact on your life, but this does not mean it has the right to rule your life.
Try to manage the envy
Why wouldn’t you be envious when you struggle with some of the most basic daily tasks and those around you continue to live life as usual? All this does though is cause you anger, stress and likely put pressure on your relationships. Two ways to get past envy are to recognize and celebrate your own (appropriately set) achievements. You can also celebrate and find joy in the achievements of others in your life. This may feel a little forced in the beginning, but the more you do it, the easier and more natural it will become.
Find a good support network
It is important to have people around you who truly understand and can empathize with what you are going through. This will not only help you feel supported and less isolated, but it will also help take some of the pressure off your loved ones. Above all, having people to not only speak about your illness, share experiences and stress can truly help you to grow and enjoy your life.
For more information on how to live a fulfilling life with a diagnosis of dysautonomia, see the links below.