Data: 387 responses pulled from the FND Hope Scientific Patient Registry February 2020
LIVING AN FND LIFE
Try to have an open honest relationship with your medical team, and if you feel they aren’t listening or taking you seriously, find another doctor who will. Never forget you are your best advocate. -Maria
Have you ever foregone care when you needed it because you knew medical professionals would be unable to help you?
People often say the trite saying, “what doesn’t kill you, makes you stronger.” What they don’t explain is how you get through the time that passes between what didn’t kill you and the point where you did, in fact, get stronger.
FND Hope was created to offer support and to provide tools you may need on your journey to healing and finding better health. Please know this does not necessarily mean symptom-free. For some “better” may mean cured, but for others “better” means fewer symptoms. The tools you need varies based on your individual and personal journey to becoming stronger. Because sometimes “what doesn’t kill you” makes you confused, lost, alone, hurt, scared, insecure and debilitated.
We created the Q & A page incase you may be finding it difficult to get direct, clear answers to your questions. Even the diagnostic label seems to be riddled with confusion leaving patients and professionals confused by the many terms used. However, many individuals do not feel that these ‘other’ terms fit their illness experience. If we can indeed agree that the mind and brain are one, then it is only logical that we choose a term that is inclusive of both.
Knowledge is power, but the information can be overwhelming. We have provided the basics of FND to help with the confusion, a link to others for support, and information to cope and help with the physical symptoms. Our goal is to empower FND patients to better health and provide support material in our FND Kit.
The reassurance we can offer is that you are not alone in this endeavour and there is hope. We encourage you to be proactive in your care and feel empowered that you are capable of achieving great things.
Sending hope for better days!
Adjusting to FND Life
If you are mobile then get outside. It may possibly be more difficult and/or take more preparation, but the benefits of even just sitting outside, going for a walk, taking a scenic drive, and so forth will boost your spirits.
Volunteering and giving is one of the best ways to feel good about yourself. There are many organizations needing help. Science shows that we can get as much out of volunteering as the people we are giving our time for or to.
Most of us forget, or are not aware, that our beliefs or the beliefs of those around us can have a dramatic effect on what we achieve in life. Limiting beliefs can stop us performing at our best.
Many find strength in Faith and a higher power. It is also a great place to build a support system.
Real People. Real Stories.
Patients from all over the world are united by symptoms, which no one can fully explain and very few understand. People from all walks of life come together to support and learn about their illness one from another. Each at different stages, affected by varying degrees of illness, and each with their own perspective, which lends insight, but not a cure. However, to one extent or another, men, women, and children diagnosed with Functional Neurological Disorder battle this disorder day. These are our stories, and someday, we hope to end them with a cure.