by Chelsea Goldstein, Dysautonomia Information Network
If you are reading this article, you have likely been diagnosed with dysautonomia recently or many years ago, or know someone who has. Prior to your diagnosis, you may have spent years searching for explanations for your symptoms. And during that search, you could have been told those symptoms are "all in your head" or "you're too young to be that sick"... the list goes on.
FINALLY getting a diagnosis could have surfaced a wide array of emotions, among them relief and validation to finally have a name for your experiences--no, it was not all in your head. Then, as you went home armed with your diagnosis, and continued living with the symptoms of your life-altering dysautonomia, your relief and validation were likely accompanied by feelings of loss, anger, joy, empowerment, etc. Whatever you felt and still feel is okay, and while everyone's reactions are different, this article is meant to address some of the major aspects of adjusting to life with dysautonomia.
Let Yourself Feel
There is no right way to feel about your diagnosis, just like there is no right way to adjust to the change of living with a life-altering condition. Try to practice accepting your emotions, whatever they may be.
I have always seen myself as a go-getter. If there was an obstacle in the way of achieving my goals I found ways to bulldoze over it. My sense of identity was very much defined by my ability to achieve - achieve my goals, achieve career progress, achieve success.
Then, my story took a turn that is probably familiar to many of you - I developed mysterious and debilitating symptoms after an infection. I had to put all of my dreams on hold, and I spent years in and out of various medical establishments to try to figure out what the heck was going on with me. I was told I was crazy, dramatic, had a low pain tolerance, and I was just fearful of growing up until one doctor listened and diagnosed me with a condition that I had never heard of, dysautonomia.
Armed with a diagnosis, I decided I would attack this new condition head on and be back to my old self - finally. The story didn't go that way, and that triggered feelings of sadness and hopelessness. Then, I got angry at myself for getting down. In my mind, feeling sad and sorry for myself meant that all those doctors who said I was dramatic or crazy were right. Looking back, I realize I was far too hard on myself. And, honestly, some days I still am. But now I try to keep an awareness that these feelings are expected. In fact, it would be a bit alarming if I didn't feel them sometimes.
After some research, I felt validated to know that it is normal to feel a TON of emotions after a new diagnosis - even ones that seem to contradict each other, such as feeling a sense of acceptance one day and anger the next. You may also go through periods of grief, sadness, bargaining, and denial (1).
It may also be helpful to realize how the stigma of conditions can impact our reactions to them. For example, people diagnosed with diabetes report feeling guilt and shame (1), while people with dysautonomia may question the legitimacy of their condition even after a diagnosis.
It is also important to remember that it is okay to seek mental health support. Our articles, You're Not Alone: Understanding Depression and Chronic Illness, and I Can't "Just Relax": Understanding Anxiety and Chronic Illness, may provide some insight. While dysautonomia is not caused by anxiety or depression, both of these conditions can develop as a result of dealing with the condition. One woman reported that she started having anxiety around having a fainting episode in public. This would prevent her from engaging in loved activities, and it created some confusion regarding what symptoms were caused by POTS and what symptoms were exacerbated by anxiety. Talking with a therapist helped her regain a sense of control (2).
Acceptance can be a fueled word, and we all interpret it a little differently. One important point is that accepting your diagnosis does not mean that you are giving up on any other aspect of your life.
While it may take time to accept your new diagnosis, many experts agree that denial does not usually have long-term success (1). You will likely go through periods of denial as you adjust to living with a chronic illness. That is okay. However, living in denial for a long period of time can lead to worse psychological well-being than facing your illness (1). While acceptance can operate differently in each person's life, here are a few ways you can practice cultivating it:
- One person with POTS said that acceptance meant acknowledging her body could no longer do the things it did before. She worked on this by taking each day as it came, and allowing herself the time she needed to mentally adjust to how her body functioned on a day-to-day basis (2). While this may seem like giving up, she actually took on the very conscious and active task of recognizing her body for what it was, and changing the way she thought about it.
- Another activity could be finding ways to challenge yourself appropriately, given your new normal. Walking down the driveway to collect the mail may be something the old you took for granted. It may, however, be a very appropriate challenge for your current body (2). Challenging yourself in seemingly small ways (and giving yourself credit for facing these challenges!) can add up to feeling accomplished and empowered within your current reality.
- Really, really try not to compare yourself to others, even others with dysautonomia (3). Dysautonomia presents so differently in each person, and every person has their own, unique set of circumstances that challenge them. If you are in a mindset of comparing yourself to others, you will always find someone who seems to be doing better than you. In my early years of living with dysautonomia, I always felt like I was falling behind in career and life goals when I compared myself to peers my age. I was also battling a life-altering illness, but I never gave myself credit for that. Please don't make the mistake that I made.
- Claim your worst-case scenario. It is natural to start to think about all the things that could go wrong with your health and circumstances when a lot of things have gone wrong. Next time you begin to imagine the worst-case scenario, start to think about all the things that will still be okay even if that scenario happens (3).
- Above all else, be kind to yourself. Think about a person you care about deeply. Would you be as hard on them as you are on yourself if they had a severe health condition (3)? Being kind to yourself is ending each day with the reminder that you did the best you could that day with what you had. Even if you rested all day you gave your body the time and permission it needed to care for itself. We will all experience moments of anger, denial, sadness, and anxiety, so be kind to yourself when these emotions arise. Your self-compassion will help you shift out of these moments more quickly and refocus on all of your wins, no matter how small.
Learn New Ways of Being
Dysautonomia may have dramatically altered your life, and you might need to think about how you can adjust your everyday activities to fit your new normal.
1. Learn: While it can be easy to get lost in the Googlesphere, a healthy pursuit of knowledge about your condition can be beneficial to advocate for yourself in medical appointments because your research will encourage you to ask more pointed questions. It will also help you recognize your specific symptom triggers (2). We recommend keeping a running list of questions, perhaps on your phone, so that they are ready to ask them when you meet with your doctors (1). Just be sure to always seek understanding from reputable and trusted sources.
2. Track: While learning about your condition from outside sources is helpful, it is also critical to understand how it manifests in you. It can be tough to remember all your symptoms, especially if brain fog is one of them, so a symptom diary can be a good way to track your day-to-day illness experiences (3). This was one of the most valuable activities I did when I was first diagnosed. It helped me realize that my symptoms dramatically exacerbated when I got poor sleep, and I could demonstrate clear trends to my doctors.
3. Manage: You will not be able to control your health entirely. If you could, you would probably know exactly what to do to cure yourself of dysautonomia. Nonetheless, you may discover there are small management techniques that work for you (sort-of, sometimes) to keep your symptoms as minimal as possible. These management techniques could be identifying the type of nutrition that makes your body feel its best, taking your medications as prescribed, or focusing your time and energy on people who support you and your health (1). It's also important to recognize that individual management techniques for dysautonomia don't always have dramatic impact. Increasing the salt and fluids in your diet may help a little, just like changing your sleeping position or wearing compression socks. Altogether, though, they may take the edge off your symptoms so that you can get you through the day. Always remember to count the small wins (3).
4. Modify: I would love to say that with determination you can do all the things you could do before you were sick. However, that over-simplified message can push people into spaces of denial, and even cause them to harm their bodies. What I will say is that what you can or can't do is individual to you, and I do believe there are ways to modify most activities so that you can still get some type of joy from them without putting your health at unreasonable risk. One person with POTS reported she had a goal to finish college. She achieved that by enrolling as a part-time student, taking advantage of the university's resources, and enlisting friends and family to help her get to class (2). There may be some barriers when you go about achieving your goals, or finding your joy, in non-traditional ways. When your energy is limited you must get clear with yourself about your priorities and focus your energy and resources there. This focus will probably unlock some creative problem solving in you.
5. Self-advocate: Teaching other people about your conditions can be exhausting. Advocating for yourself, especially in medical settings, can be exhausting. Self-advocacy is certainly an unnecessary stressor when you are already working overtime just to live your day-to-day life. However, a lot of people with dysautonomia do report they feel like they have more control over their circumstances when they speak up. This may include communicating with a boss, coworker, or professor about your needs, making sure your doctor is not dismissing your symptoms, or choosing to educate a friend when they haphazardly make a hurtful comment.
6. Have Compassion: FOR YOURSELF! It is so easy to be tough on ourselves, especially when we get messages from the outside world that we should be doing more, we're being dramatic, or we really should be better by now. This unfair messaging can trigger us to do all the things all at once to improve our health. However, that can cause unnecessary stress and can even make our health worse if we take on too much at once. Also, it is difficult to know what is actually having a beneficial effect when we make a lot of changes at once. Remember that what works for one person doesn't work for every person, so a sustainable strategy is to make small changes over time and assess how effective they are (3). That way you are only keeping the ones that truly work for you in your life.
7. Ask for Help: Asking for help can be a hard task for anyone. If you feel like a burden because of your illness, you may be even less likely to ask for the help you need. Very often, loved ones don't know how they should help, so asking for direct support with specific things can actually make them feel in control and useful in a difficult situation. Open communication is invaluable in maintaining healthy relationships with your loved ones, in professional settings, and with medical providers (3).
Tips for Friends and Family
You have likely endured the diagnostic roller coaster with your loved one, experiencing repeated moments of hope and disappointment as you sought answers to their life changing symptoms. Now that your loved one has a diagnosis, what can you do to help?
DO listen. DINET conducted a survey a few years ago to learn about experiences of living with dysautonomia. Results demonstrated that the most helpful thing friends and family can do is listen (4). When we talk, recognize that we are choosing to share our most vulnerable selves with you, even though it's exhausting, and even though so many people (including doctors) have rejected our experiences. Ask questions. Get clarification. And, please, listen openly.
DO believe your loved one. In the same DINET survey, the second most helpful thing friends and family can do is believe us. Dysautonomia can be invisible and symptoms change rapidly. We may be bedridden in the morning, but ready to socialize by the evening. Please never assume the way we look or these rapid changes in our health mean we are faking it. Instead, support us when we feel sick and rejoice with us when we do get to engage in our favorite activities (2,4).
DO gently encourage your loved one to find support. Professional support and a community of people who live with the same conditions can be essential to helping us process and validate our own experiences. Just make sure you gently encourage your loved one to find resources because some people need to process things alone before they are ready to share (4).
DO follow your loved one's lead. Some people may want help finding ways to modify a favorite activity. Others may feel loss when they try a different version of a beloved activity. Never push what you think is best (4).
DO NOT tell your loved one how they should feel. What your loved one feels is probably very fluid - they could experience a whole range of emotions as they adjust to their diagnosis. Comments that invalidated their "negative" emotions are harmful. In the DINET survey, participants reported that the most hurtful remarks loved one's made were: 1) You don't look sick, 2) Think positive, 3) You should feel grateful that things aren't worse (4).
DO NOT impose your own timeline on your loved one's adjustment. Everyone processes change, grief, and emotions in their own way on their own timeline. When your loved one seems stuck in their grief and anger, it's natural to want to encourage them to cheer up. Please be careful on how you go about this - dismissing their feelings or pushing them into "cheerful" situations could invalidate their feelings and complicate their adjustment process (4).
DO NOT take your own frustration with the situation out on your loved one. Living with dysautonomia is a stressful experience for everyone impacted by the condition, including you. You will certainly get frustrated with the situation, just like your loved one who has the condition. Remember that you are allowed to feel frustration, anger, and grief, too. Just please do not lash out on your loved one who may already feel like a burden. Instead, approach them with openness and vulnerability or try to find your own sources of support, such as a trusted friend, professional help, or a support group specifically for friends and family (4).
- Coping with a Diagnosis of Chronic Illness. (2013, August). American Psychological Association. https://www.apa.org/topics/chronic-illness
- Arotin, S. (2019, November 28). Through My Eyes: Living with an Invisible Illness. Medical News Today. https://www.medicalnewstoday.com/articles/327155
- Dysautonomia Support Network. (2019, July 3). 20 Messages for Anyone Newly Diagnosed with Dysautonomia. The Mighty. https://themighty.com/2019/07/dysautonomia-just-diagnosed-advice/
- MacDonald, H. (2020, February 20). Mental Health and Chronic Illness. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/mental-health-and-chronic-illness-r232/
- DINET Forum https://www.dinet.org/
- National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/
- National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml
- Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness
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