13 Lessons I Have Learned About Living With Functional Neurological Disorder

If you’re a person who lives with a functional neurological disorder (FND), then you may be able to resonate with some of these lessons. If you’re someone who lives with other chronic illnesses, I hope there is something here that will make you feel a little less alone in this big world.

1. At first, you may feel like you’re losing your mind.

When symptoms appear, you will put them down to something else. You may make excuses for yourself and say, “Maybe I need more sleep,” or “Maybe I’ve been working too much.” Sometimes, symptoms will appear quickly and without any warning; others will be a gradual change. You will notice your body isn’t working how it usually would and that something doesn’t feel quite right.

2. Getting diagnosed may be a long process.

The process starts off first with finding a doctor who will listen and then finding a neurologist who will listen. You may go through lots of tests, depending on the symptoms you have. You will have lots of blood tests and definitely an MRI at some point in time. You will be asked multiple times if there have been any recent stressful incidents in your life. If you end up in hospital, you will most definitely end up talking to the hospital’s psychologist.

3. You may feel two ways when getting your results back.

… Hopeful and relieved. Hopeful that, maybe this time, they found something and you will finally be able to know what’s going on. Then, relieved it’s not positive and you don’t have the condition they are testing for.

4. You may grieve at some point for the loss of your health.

Either while you’re waiting for a diagnosis or when you’re diagnosed. This will be a long process. There will be guilt for not understanding what there is to grieve for. Loneliness because others don’t understand what you’re going through and a deep sadness that comes from not knowing when or if you will ever get your health back again. For me, my grief began while I was standing in the kitchen, hungry and trying to make myself something to eat. I went to reach for the salt and pepper shaker and my hand would not move. No matter how much I wanted to, I just could not move my hand the way I wanted to. I felt completely helpless and burst into tears.

5. You may feel very lonely.

No one knows why your body has decided to not work the way it should. You suspect it could be one condition but you don’t fit there either. You don’t know how to explain to people why one minute you’re fine, and the next you’re on the floor having an episode of weakness.

6. You might begin to not trust your body.

You may start to avoid going out or seeing others because you don’t know if you will have the energy, be able to walk and talk, get stuck somewhere, have a non-epileptic seizure or have a spasm attack, just to name a few of the many symptoms people with FND can have.

7. It may be a long wait, but when you do get diagnosed you might be extremely skeptical.

Doctors and neurologists will tell you there is no cause for this disorder; it may have been by stress or it may not. They will try to describe it to you as if you’re a computer and the computer has all of the necessary parts to work but the software has a glitch every now and then.

8. The good news is, you will be told you can get better by doing physiotherapy and cognitive behavioral therapy (CBT).

They can’t say how long that will take, maybe months or years, and maybe you will always have some symptoms you will need to manage. You will once again be skeptical that your very real symptoms you have can be fixed with such “simple” treatments.

9. You may join a Facebook group to see how others cope with FND.

You will notice everyone’s symptoms are extremely varied. No two people are alike. For me, my symptoms included a global weakness of my entire body which would affect my ability to walk, use my hands and arms and hold my neck up. Sometimes, even talking and breathing was affected as well. Realizing no one has the exact set of symptoms as you will be confusing and may make you feel even more lonely, but there will be people with similar experiences.

10. Recovering might be the hardest thing you will do both mentally and physically.

You will be told by professionals “not to focus on your symptoms” and to “distract yourself with music,” especially during physio. This is hard to do when your brain is sending messages to your body that you’re weak, tired, your legs are heavy or there is pain in your joints.

11. You will surprise yourself…

… When you are able to walk for more than five minutes at a time or do your first squat in months. Then slowly but surely you keep doing more and more, and things become a little easier to do as time goes on. A year later, you may be able to run like I did for a whole eight minutes, as opposed to using the walker to get around as you did the year before.

12. Seeing a therapist may make you realize why this all began.

For me, I realized my global weakness and major fatigue came from not listening to my body’s need to take a break and rest. I would consistently push myself past my limits so my body began to take over for me and forced me to slow down. I would also repress my emotions and have been doing so for a very long time. Of course, our emotions have to get out somehow and so they did — through my body. You will learn about triggers like stress, anxiety, places or things that can set off symptoms and you will learn how to manage these.

13. Finally, your loved ones support will be one of the biggest factors in your recovery.

I have been lucky to have an amazing husband and family, who have all helped me get to where I am. My husband, who has worked tirelessly to support us when I was unable to work, would come home after a 12-hour shift and help shower me, dress me and feed me. Every now and then, when my body would completely give way, he would pick me off the floor and carry me to bed.

This is my journey of my diagnosis and slow recovery from functional neurological disorder. These are also things I wish I had known before all of this began; they may have made that journey a lot less lonely and confusing. I am not completely “cured” and I may always have to manage some symptoms — there will also be a possibility of relapse — but for now, I feel more free and more myself than ever before. I am learning to trust my body more and more each day, and to feel my emotions and accept it’s OK to feel whatever way I do.

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Thinkstock photo via MishaBeliy