We’re back with another MSW Interview. Today, we’re learning about FND and finding wellness with Alison Hayes!
I met Alison in 2018 through a monthly blogger link-up that I participate in regularly, but it wasn’t until this year that I started following Alison’s walks and live chats. I’m excited to introduce Alison to you so my readers can learn more about FND as well as the other types of health issues that Alison lives with. You’ll also learn about her health advocacy work and her coaching and wellness services. Let’s go!
MSW: Hi Alison! Thanks for being with us today! We have known each other for some time now and I’ve learned so much from you! Could you please introduce yourself to my readers?
AH: I’m Alison – I live in central New Jersey with my partner Al and our two cats Nigel and Rorschach. I was diagnosed with Conversion Disorder (now recognized as Functional Neurological Disorder) in 2003, and have a long history of depression and anxiety.
I have been living primarily on SSDI (an entitlements program in the US for disabled people with enough work credits to be eligible for social security), though I have also worked off and on over the years.
I’m fascinated by systems and understanding how they work, which has been a bit of a theme throughout my careers. My BA in interdisciplinary biology and chemistry set me up well for studying marine and aquatic ecosystems until my FND symptoms removed field or lab work from my career options. I adjusted by shifting to primarily computer-based work, training in geographic information systems(GIS), where I helped people add complex information to maps.
I started doing consulting work in that field, and ended up going back to school, getting a master’s degree in organizational change management – deeply understanding group dynamics, organizational culture, and the power of accessing your own ignorance to ask the simple questions that can lead to the biggest breakthroughs.
I’ve spent the last few years analyzing my own experiences(and what I’ve observed from experiences around me), researching related topics, and putting together my blog, thrivingwhiledisabled.com where I discuss a variety of topics related to creating your best possible life while living with a disabling condition.
I also offer online courses and 1 on 1 coaching related to either utilizing the US social welfare system or managing your own healthcare.
Learning About FND
MSW: Would you mind telling us a bit about FND and your health journey?
AH: I’ve always been a bit ‘off’ from standard expectations. I was diagnosed with a fine motor disability when I was very young and then depression at nine. I used the ‘resource room’ at school and was in the higher-level classes. My classmates didn’t really know what to make of me. My FND started in college, when I was in a relationship that turned unhealthy and borderline abusive.
My first symptom was an exaggerated shiver that turned into full-body shaking. At the time, it was chalked up as ‘anxiety’ and otherwise dismissed. I had symptoms for months, as ending the dating relationship didn’t end the interactions or emotions. After I went home for summer break though, I was able to heal more, and I set up off-campus experiences for much of the next year. Other than a very temporary return of symptoms around midterms the next term, I seemed to have fully recovered.
However, I had another small relapse when I applied to a graduate school program. I ended up working instead of going to graduate school, but the job I took lost funding not long after I started it, and I spent a couple of months without work but with the possibility of it resuming ‘any day now’.
The uncertainty triggered the return of the movement symptoms and a sudden increase in urinary urgency. I ended up becoming more and more debilitated by the urinary issues and the movement symptoms, and was finally diagnosed with FND about 6 months after the work uncertainty started.I’ve learned since then that in my case, my #FND is extremely responsive to my emotional state and to stress more generally. Via @Thrivingwdisabl Click To Tweet
The stronger my emotional response is to my life, the more likely I am to have symptoms. I’ve done a lot of life recalibrating and put a lot of energy into figuring out what I can and can’t do or handle. The other big challenge with FND is that symptoms shift and it’s often not obvious whether a new or different symptom is an FND symptom or a symptom of some other health problem.
I’ve had to put a lot of time into double-checking each new symptom I have in order to be sure that it is an FND symptom and not a sign of something else.
I’ve had multiple relapses (all due in some way to stress), but haven’t been symptom-free for more than a few days at a time – though I did have a dramatic reduction in symptoms after participating in the MoRe program in Louisville, KY in 2016. Their intensive PT/OT/psych support program was amazing and the most effective treatment out there for FND.
My most recent significant relapse was in early 2017, when my partner Al slipped and shattered his acetebulum (the biggest bone in the body, the upper half of the hip joint).
That started a year-long search for the underlying cause of his newly-discovered health issues. He was so impressed with my understanding of all of it (and my ability to get results) that he encouraged me to share this with a wider audience.
That was the beginning of Thriving While Disabled.
MSW: How have your experiences with chronic illness affected you on a personal level?
AH: It’s redefined me in a few ways. Prior to my symptoms becoming severe, I was on a path to adventure and physically demanding outdoor work.
With the unpredictability that came with my FND diagnosis, I had to completely redefine my career goals and path. I eventually had to give up on even the idea of working anything resembling a full-time position. It also forced me to predominantly aim for balance and less-extreme emotions because any strong emotional response would usually trigger symptoms, even positive feelings like passion or excitement.
I won’t try not to feel those emotions, but I have to recognize that feeling these emotions will trigger symptoms as well, which can be exhausting.
It’s also shifted who I focus on in terms of needs and compassion. I’ve always been an empathic person, and a multi-passionate one. Because of my experiences, I’m highly sensitized and focused on the needs and rights of the disabled community.
If I didn’t have FND, I doubt my focus would be as strongly on our community as opposed to other groups that also are facing inequality and in need of social justice.
I also likely wouldn’t be in the relationship I’m in, or have the perspective that I do. If my FND hadn’t derailed me, I likely would have been a marine biologist/aquatic ecologist, and simply be living a completely different life than what I have.
I’m not unhappy with my current life, but it’s important to me to acknowledge that my FND triggered a lot of change, especially since it hit me when I was in such a transitional period in my life.
MSW: Could you tell us a little about what you’re working on at the moment?
AH: My big project right now is a coaching/support program to provide 1:1 coaching to individuals with chronic conditions.
My ideal clients for this are either people who are newly diagnosed, seeking a diagnosis, or generally overwhelmed by their condition(s) who I can help understand their options and build their correct support team – or people who might have a handle on their condition but have a big scary next step that they want or need support to prepare for and get through. It’s my most ambitious offer to date.
I’m also giving a free talk to help empower folks to take control of their healthcare on November 17th, 7 PM EST.
MSW: That sounds amazing, Alison! I hope I can check it out when I get up! I know you are involved in several community outreach programs. I also know you are an active participant with FND Hope and you’re a contributing writer. Could you tell us a little more about your work with them?
LEARNING ABOUT FND HOPE
AH: FND Hope is an international nonprofit (all volunteer at the moment) specifically designed to help the FND community (doctors and patients) connect and be educated on the condition.
It’s actually a pretty common condition, but it’s rarely properly diagnosed and too many doctors are poorly educated about it, which means that too many patients get a poor explanation of the condition or how it works.
I’ve been following along on the research and the explanations offered – which FND Hope does a great job of sharing out. They bring in a lot of doctors with expertise in FND to help explain the condition and treatment options. I do what I can to help the organization – I’ve written a few articles for them as well as putting together practical suggestions for things like healthier eating, simple food preparation, and sharing my experience in the MoRe program.
I also worked with them to develop a 1:1 peer support program, but that program was put on the back burner.
If you have FND or want to do some more learning about FND, FND Hope is a great resource!
I have also written multiple posts on my blog on the topic of FND and have created an online course to help people with the diagnosis to better understand the condition and take steps in their own healing.
MSW: I understand that you are a health advocate and a coach for people who are chronically ill. How do your coaching services work?
AH: My coaching services are designed to help my client recognize their biggest challenges and then to allow me to guide them towards the best solutions for them.
I have two coaching programs currently. One is specifically for the US social welfare system. With that program, I help my clients recognize their biggest challenge and solve it.
I’m currently helping one client apply for SSDI, while I have several clients who are on SSI or SSDI and have hired me to help them to maintain their benefits while working – I’m sharing the income limitations and related rules that they can use to control when or if they lose their benefits due to income, rather than risking an unpleasant surprise.
We have four meetings via Zoom, and they have access to me via email in between.
The newer program that I mentioned above is going to be a six-month commitment with 90-minute Zoom meetings monthly, and email access in between.
My focus is on problem-solving and skill-building. My client and I will determine what their biggest challenges are, and I’ll help them to learn how to handle these challenges and take the next steps that will help them feel more empowered and in control of their medical care.
Examples of these challenges may include things like selecting their best doctor, evaluating the doctors they see, improving their ability to communicate well with their doctor, having a deeper understanding of their condition(and possibly getting useful information from medical papers), evaluating a source of information, or understanding their treatment options.
If they are facing an especially weighty or complicated medical procedure we can discuss the costs/benefits and/or develop a plan for managing the process step-by-step.
MSW: What are some coping techniques that you use to help with your day to day life? I’ve noticed how you are connecting with others on your daily walks. How do you find comfort for yourself on hard days?
AH: I am very much a people person. One of the ways that I would comfort myself pre-COVID was to have plans to go out and socialize with friends to have social and connection time to look forward to. With COVID, that’s less of an option, but one of my techniques now is to make plans to talk with friends during my morning walks or just on off days.
That connection and community really helps me and often distracts me and can minimize my symptoms.
I also have a regular meditation habit, which helps me develop mindfulness skills and gives me a space where my movement symptoms sometimes come out, which can reduce how often those bad days occur.
I developed an almost constant migraine headache a bit over a year ago, and that’s taken some work to really find good coping skills there. I feel really fortunate that while the pain has been close to constant, it hasn’t been debilitatingly severe much of the time.
My big management tool there has been finding the right treatments (the combination of botox injections and a high dose of gabapentin has brought my headache down from a near-constant 4 to more of a 1 or two with hours at a time pain-free), and spending more time away from computer screens, often escaping into my kindle instead.
FND is a really strange condition, as the damage is analogous to crossed wires in the brain, but the symptoms often mimic neurological disorders that have much more identifiable causes.
Worry about symptoms can cause a dramatically severe increase, and distraction of various sorts can dramatically decrease symptoms.I’ve learned that the worst thing I can do is focus on my symptoms, and the best is to get deeply absorbed in something else. Via @Thrivingwdisabl Click To Tweet
I’m much more likely to be able to clean or prepare food if I’m listening to music, go for a walk if I’m talking to somebody, or be able to stay still if I’m playing a simple game or fiddling with something in my hand.
So I do my best to build these distractions into my life, or always have a backup plan for managing things. Simple steps like that decrease my anxiety or stress, which makes it that much less likely that I’ll need to implement the backup plan. Dealing with the migraine and its resistance to distraction has been a new challenge to manage
MSW: What kind of tips would you offer to readers who are just getting started on their journey with illness?
AH: You will get through this!
-Doctors are human too, and can make mistakes or misunderstand information. You always have the right to get a second opinion, see a different doctor, ask about additional treatment options, or discuss your medication options.
-You are the expert on your body. Only you know what you’re experiencing. Don’t doubt yourself and always listen to your body.
-Your state of mind can have a surprisingly large impact on how you feel physically and how well you recover. Do your best to protect your mental health and take good care of yourself whatever else is happening. you deserve it.
MSW: All excellent tips! What are some words of encouragement that you like to offer to others when they reach out to you about their own journey with illness?
AH: My priority is, as mentioned above, that they are the expert in their body – only they know their own experiences. I believe that they are experiencing what they say they are experiencing. Their pain is real, their fear is real, their symptoms are real.
It’s possible that their diagnosis is wrong, or the explanation of their symptoms is wrong, but they aren’t making it up or exaggerating.
They have the right to quality medical care, diagnosis and treatment.
The system is broken. We have to do our best within it, but most of the challenges being faced are because the system is broken, not because of failure on their part.
MSW: If you could let anyone know anything, what would you like them to learn about FND?
AH: FND is a neurological condition, even though conversion disorder (the older term for it) is considered a psychiatric illness. The modern understanding is that the sections of the brain impacted by FND are associated with the connection between emotions and movement, and with awareness of control over your body.
Each person with FND has a relatively unique constellation of symptoms, somehow related to the system(s) in their body that are weakest or most sensitive. In my case, primarily emotional stress seems to primarily trigger movements I cannot prevent in areas of my body I normally can control.
A friend of mine with FND is most sensitive to the presence of gluten in her body, while others are most triggered by temperature change, emotional stress, hormonal changes, or other forms of stress. I mostly have movement symptoms (but also have urinary and sensation symptoms), while other people primarily have non-epileptic seizures, paralysis, weakness, stroke-like symptoms, blindness, and more.
FND isn’t as much about the symptoms, but the patterns involved, combined with the lack of ‘typical’ causes for the symptoms. If you’ve been diagnosed with FND or have unexplainable symptoms that seem acutely stress-responsive, then it may be worth doing a deeper investigation.
FND is commonly misdiagnosed and is commonly used inappropriately as a diagnosis of exclusion, so if your doctor suggests FND because they are out of ideas, it’s extremely important to get a second opinion, preferably from a doctor with a good reputation in the FND community.
Thanks so much for joining us today, Alison. I have been all over your site and thought I knew you fairly well (for what we post on blogs), but today’s interview was terrific. I learned so much more and wish you the best of luck with your coaching services and advocacy work! Take good care, Alison!