Month of Gratitude, Week One: Satisfaction

As it is the month for gratitude, I am going to write at least one post a week this month discussing illness and gratitude. Although illness has taken many important things from me, there are many gifts it has given in return. One of the most important lessons illness has given me is to learn how to be satisfied and gracious in that satisfaction.

Dissatisfaction is a state of being for many of us, and it can be a valuable tool to help us achieve goals. I lived most of my life always thinking, literally, “what’s next?” I wouldn’t have been able to go to grad school twice, achieve my goal of getting a tenure-track professor position, climb mountains, or power through illness like a warrior the last few years if I didn’t know how to channel “what’s next?” into achieving goals.

Yet, this “what’s next?” also pushed me to make choices that weren’t good for my health and, more importantly, it blinded me to the immeasurable gifts I already had in my life. If I have one regret since getting ill it is that I took too much for granted and didn’t appreciate what I once had that is now gone. “What’s next” was a distraction from being mindfully present and allowing myself to surrender to satisfaction, to look around me and feel grateful for my life.

We are trained from a very young age to never be satisfied. We are conditioned to become consumers from the moment we are born and to look for “bigger and better.” Satisfaction, in American culture especially, is a truly radical idea. Everywhere we turn, we are constantly persuaded to want more and to be more. “Bigger and better” and “what’s next” are illusions; they create desires that can never be quenched.

Yet, as the speed in which my world spins has slackened, as the alacrity of my own body has dampened and my legs—once athletic and invincible—stumble along at a glacial pace now, I am now still much of the time. It has helped my mind be still as well. In moments that are thick with suffering when I’m lying in bed and surviving moment to moment, I am forced to live in the present. The pace of my world has significantly decelerated, but the images of life are no longer blurred in speed. They have color, texture, definition.

It seems ironic that illness would give me this lesson. If we are often told “your health is the most important aspect of life,” then you would think living with a life-limiting illness would be the most unsatisfactory state of being. Yet, “your health is the most important thing” is a platitude; it assumes that those of us who live with chronic illness have nothing because we don’t have “our health.” This is fundamentally false. The loss of my health and my independence has taught me to value what I still have and despite being ill I can still enjoy what I still have.

It has taught me that there are moments to savor in life. There are moments when all of the ingredients of life—the people in our lives, the words we say to each other, our perceptions of the world, our self-image—meld into something truly delectable. These are the moments when we can feel truly alive, feel the electricity of being human. These moments were not on my radar before illness—before I was forced to be still and live in the present. When you live under the spell of “what’s next,” it’s easy for these moments to pass by.

I try to find moments throughout the day to just breathe in satisfaction and feel it completely. 

Feel...

Satisfied with the limitations I have now and what I can still do

Satisfied with my appearance

Satisfied with spending most of my time at home

Satisfied with each moment I get to be outside and be part of the world

Satisfied with my relationships

Satisfied with my material possessions

Satisfied with how I physically feel in this moment right now

Satisfied with my talents and abilities

Satisfied that the present is here but the future is a mirage

Satisfied with the treatment I have right now

Satisfied with the time I had with my mother

Satisfied with the change I am able to enact in the world

Satisfied with the energy I can give to others

Satisfied that my condition may get worse or get better

Satisfied that I may work again or I may not

Satisfied that my place in the world is just as it should be right now

Feeling satisfied at times doesn't have to stop us from setting goals and seeking improvement in our lives and in the world around us, but it's ok every once in awhile to appreciate and value that what we have is enough. Satisfaction also doesn’t have to be a constant current and it is by no means a constant sensation for me, but illness has forced me to look around at the world and appreciate the gift of life. It is an integral part of living with acceptance. In those delectable moments I can say thank you for the giftedness of life, even if it’s just for a breath—but I’ll make it a long breath and try to feel an entire lifetime of satisfaction in that moment.

I hope that you also have moments of pure satisfaction, moments where you can just stop and say "thank you."

How has illness or any other setback in life helped you feel gratitude? 



Here's a great TED Talk about gratitude: "It is not happiness that makes us grateful. It's gratefulness that makes us happy"

9 Things to Say to Someone with Chronic Illness

I’ve read many lists describing “what not to say to someone with chronic illness,” so I wanted to offer a new spin. These lists are valuable for the chronically ill and the healthy, but the lines of communication between us can be fraught with misunderstanding. It’s important to recognize that there is a lot we can still say to each other, and these communications can be positive. This is an extension of an earlier post about how to help a loved one who has chronic illness. Of course there is much more that you can say to someone with a chronic illness, but this is a good place to start.

1.  “I believe you”

This one is especially potent. For many of us who have invisible conditions, we hear “it’s all in your head” everywhere we turn. I think there’s a cultural assumption that physical illness manifests in tangible, obvious signs: loss of hair, paralysis, loss of weight, etc. But often, there is no visible trace of debilitating diseases. You can’t “see” a broken autonomic nervous system, or an inflamed colon from IBD, or the ravages of kidney disease. With conditions like Dysautonomia, the medical establishment even struggles to identify and diagnose it because of its nebulous nature; the patient may “look normal” but they live a life that is anything but normal.

If a loved one tells you about their condition, their symptoms, and their limitations, they are showing an incredible amount of trust in you. It may be easy to interpret anyone’s response to their condition as “laziness,” but trust that they are fighting a battle every moment that requires tremendous effort. Recognize the incredible amount of strength it is taking for them to fight this battle.

Saying these words to your loved one or friend is a beautiful gift they will be eternally grateful for.

2.   “I want to understand”

As an extension to #1, I often see in the health communities I’m in people discuss the lack of support they receive from friends, family, spouses, etc. because loved ones do not understand the symptoms of the condition. Sometimes it’s difficult to wrap our brains around all the ways illness can manifest. Why would someone who looks perfectly healthy suddenly start fainting whenever they stand? How is that a thing? Yet, it really is a thing with Dysautonomia. Fact truly is stranger than fiction in the world of illness.

Often when you have a chronic illness, people come out of the woodwork with unsolicited advice and sometimes sanctimonious suggestions about how we should be managing our conditions. This is not the place to start:

A simple Google search can go a long way in understanding your loved one’s condition and symptoms.  Understanding the Spoon Theory also will give you some idea of how they live and plan their life. Asking them questions about their condition and treatment can also give you a lot of information. Your loved one is probably so informed about their condition that they can present a powerpoint at a medical conference on it, especially if they have a rarely diagnosed condition. As with #1, if you say you want to understand what they are experiencing, it shows that you value and appreciate their struggle and efforts to manage their health.

3. “How can I help?”

Learning about their condition may also give some insight about how to help them with their battles. Your loved one may need help with simple tasks, but more than likely your loved one will need your understanding and empathy as they try to live a full life despite illness. 

Asking for help sucks. We are conditioned early on to value our independence and brush off any appearance of vulnerability. I have never ever been good at it, but I have learned that it is sometimes necessary. If you take the initiative to ask your loved one how you can help them or how to be available to help, then they do not have to go through that difficult process of getting the strength up to ask for it.

4. “Can I visit, call, email, text?”

Not everyone who is managing a chronic illness is home-bound. Some of us are, and some of us manage to live full lives. No matter the level of functionality, however, you have your good days and bad days with chronic illness, and we’re in a constant battle with our bodies to force them to comply. This can make staying in contact with family and friends difficult, especially if driving or leaving the house is challenging.

Illness is isolating, devastatingly so. This was something I’ve learned to live with but I was not at all prepared for it at the beginning. I’ve been lucky that my friends and family have been understanding as I have become home-bound over the last year.

Know that your loved one would give anything to be able to have a vibrant social life and be more active, so be patient as they navigate life on their own terms. If you can reach out to your loved one, you can help get them over the bridge of the isolation and bring some joy to their life.

5. “Here’s a funny story”

As an extension of #4, if you can say something to your loved one to brighten their day, that’s usually better than handfuls of chocolate (most of the time at least).

My good friend Carrie Anne has Crohn’s Disease and we usually chat online or text throughout the day, even though she lives not far from me. We call ourselves Team Calamity and try to lift each other’s spirits each day with our affinity for the absurd. When my friends come by and we play games, we unleash the floodgates for trash talking and your mom jokes. These are moments I can try to forget about being ill and just enjoy life, and it’s pure bliss.

Your loved one may sometimes need empathy or a shoulder to cry on, but a good laugh is more powerful than almost anything else you can give them.

6.  “Let’s do something fun that’s within your limitations”

In relation to #4, your loved one may have limitations but they still want to live the fullest life possible. They may not be able to do the things they used to be able to do, but they still want to do whatever they can. If someone puts pressure on me to do something that used to be easy for me but is now difficult or impossible, I shut down. I cannot participate if expectations are impossible for me to meet. 

You can talk to your loved one to work together to find alternatives so they can participate the best they can and still have a great time.

7. “This can be hard for me too”

It’s also hard for friends, family members, or even acquaintances to watch someone suffer, often inexplicably. It’s a frustrating, disheartening, and aggravating process for them too. I think it’s ok to share your own struggles with adapting to your loved one’s illness because it shows you are on their side and invested in their success. I’ve seen this particular problem lead to serious stress or even dissolution of relationships. It’s hard to accept that your loved one has serious limitations and needs help.

Being a caregiver is a tough gig. I’ve watched my husband do it and my dad be a caregiver to my mother, and I’ve realized they have it harder than the one they are caring for. Significantly harder. My husband is the sole breadwinner in our family and carts me to appointments, pushes my wheelchair, brings me medicine/fluids/cats when I can’t leave my bed, and has to pick up the slack on my ever-increasing list of things I can no longer do. This is the case for many people who have spouses who are ill.

The acceptance train is a hard one to catch, but we all have to board it someday, the sooner the better. I don’t mind if anyone wants to say this and discuss their struggles as long as it comes from a place of compassion.

8.   “I support you/ care about you/ love you unconditionally”

This may be a no-brainer. We all need to know we are loved and valued but when you are dealing with chronic illness, this is especially true. I often feel guilt and frustration about my limitations and the efforts those around me have to make to help me get through life. Hearing these words can be a reminder to your loved one that despite the struggles you still love them and care about them unconditionally.

9.   “We got this”

I have learned that managing and living with illness requires a team effort. It’s a collective enterprise that requires the work of your loved one, family, friends, doctors. Many people live a fantasy that they are independent and don’t rely on an interdependent network of support to get through each day. Before I got ill, I did for sure. When you are chronically ill, you can no longer live that fantasy. We have to carry each other. 

We are stronger together and we can face the challenges of life as a team. 

We got this. 

How to Help A Friend or Loved One with Dysautonomia (Or Any Chronic Illness)

One of my goals while being on leave was to post more regularly but I hit a really bad patch the last few weeks and didn’t get this post up sooner. But I’m working on getting back to the upswing and writing, walking a bit, and singing to my cats regularly again. My BFF Carrie Anne recommended this topic to me, and I thank her for it. This post is in honor and in celebration of Dysautonomia Awareness Month. 

Although Dysautonomia is an invisible illness, living with the condition has very real ramifications in the lives of patients and their friends and loved ones. The illness can be so devastating that some are unable to do normal activities and have to rely on a caregiver. Everyone needs support in their lives, but for those who are disabled and/or chronically ill, that support becomes vital. 

For many people, it is difficult to ask for help. In American culture, we are taught to value independence and self-reliance. I have found that many who cope with chronic illness once had lives filled with ambition, over-achievement, and self-determination, myself included. When suddenly you are confronted with a life of dependence and survival, there is grief and frustration, which can be difficult to communicate to others. Yet, having a support network that you can trust and rely on can make all the difference for Dysautonomia patients.

Many may think that helping a friend with chronic illness or disability means helping them perform tasks. What your friend or loved one really needs is often intangible. I decided to ask some of the online Dysautonomia/POTS groups I am on about this topic to get their feedback and almost everyone responded with the intangible forms of support. Whether you are a caregiver, a loved one, or a friend of someone with Dysautonomia, I hope you find this useful:

Understanding

Almost every person who responded to my question included this word. Understanding takes many forms, and I believe for many of those who responded it meant trust—trust that even though the illness is invisible, the disabling symptoms are very real. Your friend/loved one is likely dealing with constant dizziness, fatigue, brain fog, nausea, difficulty standing, difficulty breathing, GI symptoms, fainting, weakness, and obstacles performing simple tasks like cooking, driving, showering, or bending over. Their system is on a constant roller coaster ride of fluctuating blood pressure and heart rate because their body is no longer able to self-regulate automatic functions. Even if you cannot visibly see these symptoms, trust that they are experiencing them. They are dealing with constant frustration because of these symptoms and just want someone to understand how challenging life has become.

Many patients deal with constant invalidation, particularly from the medical community. Almost every Dysautonomia patient has at some point heard “it’s all in your head” or “it’s stress.” If a loved one or friend says these words, that invalidation becomes more devastating and emotionally damaging. Imagine dealing with life-altering or even life-threatening symptoms but constantly being dismissed as just “crazy” or “attention-seeking.” The emotional cost of this is unimaginable and it adds to the magnitude of stress illness already causes.

This condition is complicated and rarely diagnosed, so many Dysautonomia patients have to fight hard to “prove” their illness constantly. It can take many years before a patient receives a complete diagnosis. When a loved one or friend just says the words “I believe you,” all of that stress and invalidation washes away. He or she can now be completely honest and authentic with you. It is a true gift. You can even research Dysautonomia, their subset of Dysautonomia, and even their other conditions to gain a better understanding of the symptoms, prognosis, and treatment.

  

 Patience

Many who responded also mentioned this word. I would list this as my number one desired form of support. Your friend/loved one’s life has been completely altered by this condition. They are often grieving their former life and trying to figure out how to continue to live a full or half-full life while ill and disabled. This means they are unable to do what they once could. This could be true in terms of work, social life, hobbies, family obligations, household chores, etc. This illness can alter every aspect of a person’s life. They need your patience because their capacity to do these things has diminished. They may miss family functions or have to get accommodations at work, and they need your patience and understanding that they would rather be fully present in all aspects of life. They are courageously living life and putting on a brave face.

For me, once I became ill I realized how much I had taken for granted in life in terms of what I was able to do. Going to the store wasn’t a massive undertaking. Trying to clean my house didn’t take all day because of constantly having to rest. I didn’t live most of my life on the couch or in bed. Whatever the severity of the illness your friend or loved experiences, they can no longer take participation in life for granted and they need your patience as they try to still participate despite the physical obstacles. Your friend or loved one can be relatively symptom free for an hour or a day and then suddenly bed-ridden. There is often no rhyme or reason, so they need your patience as they navigate the ups and downs of the illness.

Communication

Communication is essential in any relationship, but it takes on new meaning when your friend or loved one is ill. Last week was one of the worst weeks I’ve ever had and by Friday I needed to go the hospital because I was having difficulty breathing and was unable to walk just a few feet. My husband and I discussed whether it was really worth it to go to the ER or not. We weighed the options together and ultimately decided it was not. These types of communications are typical for caregivers and Dysautonomia patients. Sometimes you are faced with very difficult choices because the cost of this illness is paid out financially, emotionally, and physically. Being able to communicate with each other about these choices and the daily struggles of life can make them more manageable because you can tackle them as a team.

National Public Radio recently did a study on stress and the sources of stress, and they found that the highest forms of stress are related to health. What this data doesn’t state is that chronic illness and poor health can be stressful for all parties involved, not just the patient. Caregivers in particular deal with a lot of pressure and stress. I am no professional, but it may be self-evident that communicating with each other about the challenges of dealing with illness could help alleviate this stress.

There’s an undercurrent of guilt when illness takes over your life because how much it can affect others. I often feel the need to apologize to everyone all of the time. If patients and their loved ones can communicate about their challenges, perhaps the emotional and mental strain of illness can be assuaged for all parties. Dysautonomia patients can communicate their limitations and capabilities in terms of housework or what they will need at a social function so that others can help them. Suffering in silence is not a solution. Listen to your loved one to understand what their needs are and this could limit the frustration that often comes with an invisible illness.

 

      Support

Support comes in many forms, and your friend or loved one needs your support. Because some patients are home-bound or are very limited in their activities, they may not get to see friends or family very often anymore. Stopping by their house or calling, emailing, texting to just ask “how are you doing?” or say something funny can really brighten their day.

This illness can be isolating. Many patients never meet anyone else in person who has the same condition and leaving the house is challenging and exhausting. Feeling alone and misunderstood is common. You can check in once in awhile with your loved one or friend to see how they are doing to show them that you support them and think of them. Everyone needs to know they have a cadre of people cheering in their corner, and this is especially true for those with chronic illness.

 

      Saying the right thing

I think many people are worried about saying the right thing to someone with a devastating illness, but I don’t think “the right thing” exists. I think there’s only honesty. Tell your friend or loved one that you miss them, you think of them, you hope their treatment is going well. That you wish them an endless supply of chocolate and puppy kisses. Tell them you don’t understand their condition or why it has altered their life. I only know the wrong thing to say is “I don’t believe you,” but beyond that just be honest, ask questions, and listen. Your friend or loved one probably doesn’t want more from you than that.

Caregiving and support is a two-way street. For Dysautonomia patients, I think we could read these suggestions as “how to help friends or family understand our challenges” as well. We also need to understand, be patient, communicate, be supportive, and forget about saying the right thing. If medical professionals are struggling to crack this strange condition, we can’t expect family, friends, or strangers to fully grasp it either. We’ll get through this together.

I hope I covered most of how to help your friend or loved one with Dysautonomia but feel free to suggest more

For more information on Dysautonomia, visit the Useful Links page on this blog