Because of the fear and anxiety associated with the topic of illness, many people avoid conversations about the all-too-present reality of how physically vulnerable we are. — Tamara McClintock Greenberg Psy.D.
There can’t possibly be anything that will hurt a parent more than hearing that your child has an incurable illness like dysautonomia. For sure, they won’t need to get radiation therapy, which is often necessary for cancer patients. Staying away from sweets or having insulin injections practically forever is just for the diabetics as well. But the fact that a kid will most likely struggle with the chronic disease for as long as they live after the diagnosis can’t be comforting either.
The typical thoughts of parents who witness the symptoms in motion include “If only I can transfer their pain to me” and “I hope a miracle will happen and dissolve the illness.” Neither, of course, is plausible at the time of writing this blog. You may leave the treatment to the physicians and focus on helping the child through other ways instead.
- Never Doubt Your Kid’s Words Immediately
The most prominent fear of parents whose youngster has the disorder is that they might use their knowledge of dysautonomia to get out of unfavorable situations. In case you ask the child to clean their room, for instance, they may say that they’re dizzy or feeling unwell in general. Despite that, it doesn’t mean that the symptoms aren’t there.
When you live in the same house as your kiddo, you should know by now whether they’re capable of efficiently lying or not. If they are, you may scrutinize them further before believing they aren’t in great shape. Considering they don’t lie or are not good at it, however, then you shouldn’t draw conclusions about what they’re saying before they even finish talking.
Likewise, couples who have been together for some time organize the nuts and bolts of their lives in highly ritualized and interlocking steps that create stability and fluidity. — Katie Willard Virant MSW, JD, LCSW
- Ensure That They See TheDoctor On A Regular Basis
It is also essential for anyone with dysautonomia to get checkups with a specialist regularly. Even though it won’t be cheap, that’s the best way to understand the progression or regression of the syndrome.
- Maintain Your Composure
When kids go through puberty, they develop mannerisms and ideas that can make a parent happy or sad. It’s cool in case your kiddo is one definite cookie, to the point that the symptoms of the illness don’t faze them too much. But once they give in to their rebellious side and start talking back at you or sneaking out at night, you might lose your calmness before you know it.
Will your outburst help your kid? No. If anything, it may merely aggravate the situation as the children see how much effect it has on you. So stay level-headed to help your offspring better.
Sometimes the cause of a chronic illness/condition can be identified, but often no specific cause can be determined and nothing can explain why it happened. — Dan Mager MSW
- Consider Joining Support Groups
Taking care of a child with dysautonomia can’t be as straightforward as dealing with a regular kid. It may well be like stepping on eggshells in the beginning because there are things you can’t expect the patient to do, e.g., go to classes even with a terrible headache.
Joining a support group may help some moms and dads overcome this issue. The organization ideally consists of parents whose children have dysautonomia too. You may ask them questions and garner advice on how to help your youngster better.
- Subject YourselvesToFamily Counseling
Whether your child is six or 16 years old, you may speak with a counselor together and deal with the psychological aspect of the disease. The ups and downs that come with dysautonomia, after all, don’t affect the patients. While the latter feels its symptoms alone, knowing that you can’t alleviate their dilemma can be burdensome for parents. You might be concentrating too much on the ill kid as well, which may cause your other children to rebel or develop adverse feelings toward the entire family.
Through a group counseling session, you’ll be able to address all those issues. You can learn coping mechanisms for negativities as a family as well and become one another’s rock.
When you got married, and the pastor or priest asked you to recite your vows, did you ever think that you’d genuinely have to share the pain and sorrows of your life partner?
The thought does not often come to mind of many couples, especially when both are super fit. They rarely get sick aside from the usual muscle ache or seasonal flu. But when your better half has or develops a chronic illness, that’s when the rocky road starts.
There may be days when your spouse needs help in moving out of the bed. In some days, you may not be able to touch him or her as it hurts everywhere. In the worst situations, your significant other may also get short-tempered since their movements often have limitations.
Avoidance regarding talking about illness was a familiar, yet still surprising aspect of my experience. — Tamara McClintock Greenberg Psy.D.
Regardless of those struggles, however, your marriage can still work for decades. You merely have to:
Right after opening your eyes in the morning, the first words you utter should go along the lines of, “How are we feeling today?” or “Are you OK?” If your ill partner gives you a positive reply, that means the chronic disease isn’t active, and you will most likely have a normal day. In case you get a “no,” though, then you can expect twists and turns before nighttime comes.
Checking in with your spouse is very significant as that’s the only way you’ll know their present condition. It isn’t alright to never ask, trying to believe it’s all part of a dream since that will be unfair to your husband or wife. Besides, it may result in fights, which folks with chronic illnesses don’t need at any given time.
When you are both in a fantastic mood, make time for creating your game plan for the rest of your life. That should involve what your better half can do at home if they’re not sick, what you have to do to pick up the slack, how you can figure out when the lingering pain turns itself on, etc.
When one member of a romantic partnership becomes chronically ill, the dance of shared living that the couple has built together is stopped. — Katie Willard Virant MSW, JD, LCSW
The thing is, managing a chronic illness is like going to the war zone. If you step on that battlefield without a sound strategy, one of you will lose your patience, and the marriage will crumble.
Your bond with your significant other will remain strong as well once they know that you support them 100%. You can show that by accompanying them to doctor’s appointments, cooking meals that suit their diet, and improving your lifestyle in a way that your spouse can benefit from it too.
Of course, you are welcome to feel frustrated with the situation at times. You are only human, and it’s not healthy to bottle up your negative emotions for fear of upsetting your lifetime partner. But the latter won’t get hurt as much as you assume when you communicate and continue helping out in every aspect possible.
Having a chronic illness is extremely painful to deal with. Though the aches are mostly physical, every lousy day can depress you and make you believe in yourself less. Despite that, you and your spouse only need to hang on to each other for your marriage to endure even a recurrent disease.
If you experience a chronic illness/condition, with time and practice, you can make the adjustments necessary to establish a “new normal.” — Dan Mager MSW
The topic of illness makes most of us feel anxious and helpless. — Tamara McClintock Greenberg Psy.D.
When life gives you a health condition that you may never be able to outgrow, e.g., dysautonomia, and you are still unmarried, there are inevitably many thoughts that keep you up at night.
One of them is if you will ever find a good man or woman to date. In case you come across a nice fellow, you might worry about how he or she will behave once they know of your chronic illness.
Hopefully, it is below you to entertain the idea of hiding your disease, its symptoms, causes, et cetera, to a prospective lover. Things will become disastrous for you two once the other person learns about it, mainly if your decision puts your life in danger. In that sense, it will not be your illness that’ll push him or her away – it will be your lies.
Considering you are falling for a special someone, you have to inform this individual regarding your dysautonomia before making the relationship official. Here’s how you may do that.
- Stay As Factual As Possible
Your objective is to tell someone that you have this form of dysautonomia, it does this and that to your body, and there is no cure for it at the moment. You may want to set your emotions aside and speak of everything that a specialist mentioned about the disease. This way, you can both be on the same page.
Chronic illness is an experience of continual unpredictability. From day to day, even from hour to hour, health can fluctuate dramatically. — Katie Willard Virant MSW, JD, LCSW
- Allow The Person To Process The Information
If your better half becomes speechless, it is best to give them space for a while. Though you may be dying to find out whether they are okay with the truth that you just dished out or not, you should understand that it will not be easy for them to accept in one snap that they are dating somebody with a chronic illness.
- Get Ready For Their Reaction
From the time you choose to talk about dysautonomia with your special someone, you need to prepare for how that person will react. The ball already rolled in their court, remember? You cannot take back any fact that you spilled; rather, you should not try to do so.
If he or she calls you and still wants to be with you, then that’s marvelous! You hit the love jackpot, and you found someone who wishes to remain by your side in sickness and in health. In case you never heard from them again, then you ought to be grateful for learning about the shallowness of their liking for you early.
It can be especially upsetting and confusing to learn you have a chronic illness/condition. — Dan Mager MSW
To sum things up, it does not make you a baddie if your primary wish is to present yourself as a healthy individual to your loved one. Perhaps you are fearful for what the significant other may say, or you merely want to enjoy your days with him or her. However, how can your relationship be real when you deprive your special someone of the truth about your health condition? Furthermore, how will you know that he or she will be there during your lowest moments if you are unsure of what they are going to think about your dysautonomia?
Try to be upfront regarding the chronic illness as soon as you realize that the person will have an essential role in your life. Don’t wait for romantic feelings to grow before you do so; otherwise, it will stress you out too much.
Many chronic illnesses cannot be cured but can be managed in ways that allow those afflicted with them to maintain their quality of life. — Dan Mager MSW
How will you react after going through a series of blood tests only to find out that you have an autoimmune disease that even the best doctors cannot cure?
Accepting your fate may be the last thing to take place. You might talk to various specialists first, hoping to receive a different diagnosis. You might also look for holistic remedies nonstop and try every massage, therapy, or tonic that will supposedly improve your health condition.
In case your efforts turn out to be futile, that is when the hate can make its way to your heart. You despise your immune system for attacking you. You feel ill towards the doctors who have no long-term treatment to offer. It may not be an overstatement as well to say that you possibly hate your body just for being unhealthy.
Despite all those emotions you deserve to express, however, it is still not okay to keep a grudge against your body. If you are a victim of the illness, then so is your body. In fact, you need to learn how to love your B-O-D-Y now more than ever.
Avoidance regarding talking about illness was a familiar, yet still surprising aspect of my experience. — Tamara McClintock Greenberg Psy.D.
Avoid Pushing Yourself To The Extremes
The reality of having a recurring illness is that there are some challenges that you cannot face sheer determination since it will take a toll on your body. For dysautonomia patients, for instance, running a marathon may be quite impossible as their hearts already beat so fast even when seating still. For the ones with severe lupus, dieting may lead to frustrations because their weight might remain above the ideal number.
During these moments, you have to stop pushing yourself to do something that you know your system cannot handle. The result of that will not be pretty. Instead, merely focus on the stuff that you can do and function in moderation.
Take Care Of What You Eat
As tasty as your food choices may be, how sure are you that they are not contributing to the flare-ups that you deal with these days?
A diet high in sugar or fats, frankly speaking, is a no-no. It can sustain your energy for some time and raise your mood, but you may feel awful when you start gaining weight because of the sweets and burgers you devour. Stress is likely to come then, which is among the trigger factors of any chronic illness.
What you need to do is consider leaning towards the vegetable section of the supermarket often. Try preparing your meals too instead of depending on restaurants to make them for you. Furthermore, you may still have chocolates, ice cream, or greasy foods, but only if there is no other option.
I made it clear in my tone and body language that my chronic illness was a minor setback, a hiccup, a pesky footnote in the narrative of my life. — Katie Willard Virant MSW, JD, LCSW
Bonus: Surround Yourself With Optimistic People
Whenever it seems difficult to dig deep and find confidence in yourself due to the illness, you can always speak with individuals who have a positive outlook. Their motivation to stand up for themselves and go after their dreams can be contagious, and it will be awesome if they can infect you with their optimism.
Although you carry an autoimmune disease, it does not mean that your system is forever broken. You are whole. You have the right number of fingers and limbs, you can walk and run if you need to, and you are free to do anything your heart wishes. All you need to do is remember all the ideas above, and you are undoubtedly set for life.
As promised, here are more practical ideas to manage POTS, in the simplest way possible.
We’ve medicalized chronic illness such that, if we talk about our experiences at all, we use the language of medicine. — Katie Willard Virant MSW, JD, LCSW
Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia, is an irregular spike in heart rate that occurs when a patient goes from being laid down and then, standing up. Treatment is prescribed depending on the symptoms, and it is a combination of methods to address cardiovascular dysfunction.
This is the second part of the article which tackles all about Postural Orthostatic Tachycardia Syndrome, which is a form of dysautonomia. To continue, here are more facts about the illness.
Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia, is one rare health condition and as it follows most people all over the world are not well educated about it. But just like any other health ailment, it should be studied, and the details of the said condition should be made well known to the general public. With this, below are some of the facts you need to know about Postural Orthostatic Tachycardia Syndrome or POTS.
Neurasthenia is a medical term founded in the 19th century that turns previously healthy people weak and unable to function normally than before. Its symptoms are complicated, usually fatigue, pain from a part of the body that would move from one section to another (sometimes it goes and then comes back again), overall body weakness, and gastrointestinal symptoms. Doctors had a hard time explaining these symptoms and would attribute it to a weak nervous system. Traditional therapists would also conclude a mental health issue.
I have been working with a lot of individuals who deal with postural orthostatic tachycardia syndrome (POTS) to know that many of them have gone to psychologists or psychiatrists first to diagnose the illness. Some of the symptoms related to it, after all, are known indicators of anxiety disorder. E.g., heart palpitations and dizziness. Despite that, there are more studies now that show that POTS is a real autoimmune disease, not a sign of a mental condition.
Being positive all of the time when dealing with illness is unrealistic. In fact, being excessively upbeat is sometimes linked with the denial of illness. — Tamara McClintock Greenberg Psy.D.
One investigation that has been published in Clinical Autonomic Research in 2014, for instance, has revealed that the visceral and somatic reflexes of people with POTS are no different from regular people. What it entails is that the palpitations that the patients may experience are not due to psychological reasons. The sensations have “organic origins,” as they say so that they may come from the central nervous system or internal organs. Nevertheless, some individuals merely deal with lightheadedness when they are standing up – and no palpitations at all – that’s why it remains difficult to make conclusions on the matter.
Another symptom that’s common among patients with POTS is brain fog. According to some experts from Vanderbilt University’s School of Medicine in 2015, many folks complain about mental clouding. In other words, they have trouble remembering, reasoning, recognizing, and sometimes even concentrating on things. Such a sign can be a source of stress, especially if a lot of people are counting on you to do your tasks well. Upon comparing the cognitive performances of healthy and non-healthy subjects, the researchers have gathered that there’s an obvious issue with their ability to process or pay attention to circumstances.
Now, the reality is that there is no known cure for any autoimmune disorder, including POTS. But if you can at least counter the mental-clouding symptom, that may make life a dozen times better for you. Here are some incredibly practical tips on how to improve your cognitive function now.
Talk To A Kid
I am pretty confident that I have not seen this technique mentioned in any other article yet. Nevertheless, it does not mean to say that it cannot help you mend your mind. Even though there are already kids who know more about life than they should, most of them still do not have an accurate perception of how the world moves. They tend to ask brilliant questions as well that can faze even a highly dignified person. Thus, if these children always throw out-of-this-world items at you, it may force you to think harder than ever and (hopefully) recalibrate your brain.
Understanding the patterns and determinants of your well-being is key to living well with chronic pain. — Deborah Barrett Ph.D., LCSW
Sing Your Heart Out
If there is one thing that I like the most in life, it’s the peace that I get when I am alone. However, even if I am not a fan of noise, I still can’t seem to concentrate on various tasks at hand when I am not singing or listening to music. There is a significant change in my recollection capability when I am singing because I get to memorize one whole science textbook, word for word when I am doing it. My friends and family always tell me that I am weird because of that. To prove that it is acceptable to sing my heart out to remember stuff, I have shown them a study related to it. It states that learning new songs increases the level of acetylcholine in the body, which lets us build new memories and retain the old ones. Try doing it every day and wow everyone around you when they see that you are not just an awesome person but an awesomely smart person as well.
Watch TV Shows More Often
Many adults forbid their kids – and themselves – to stay in front of the TV for more than an hour for fear of getting too much radiation from it. Although it is true if you merely keep a one-meter distance from the television, there are recent researches that confirm that children who watch TV all day long leave behind the others who are not allowed to attend the television in terms of academic standing. In my opinion, almost everything that you have to learn about life – from general to scientific knowledge – can be learned from the different channels that you can find there. So, if you are still cringing with the thought of sitting to watch TV, try it before you dismiss the idea.
Yes, I live with a disease that is not going away. It has changed and continues to change me profoundly. — Katie Willard Virant MSW, JD, LCSW
Kindly be reminded that the tips mentioned above are supposed to boost your cognitive function alone, not cure postural orthostatic tachycardia syndrome (POTS). The latter is something that you should receive treatment for from a specialist. What we merely provide here are practical ways to counter somehow the brain fog that you may experience due to the condition.