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. 

Routines and Goals: Resting Counts!

Being ill and unable to work means you spend your days lounging on the couch, watching intellectually-stimulating daytime tv, eating bonbons—enjoying a permanent vacation. Actually, it’s nothing like that.

Being able to sit on your couch indefinitely may seem like a dream lifestyle, but trust me, it gets old very quickly. I have acquired new skills like being able to recite dialogue verbatim from my favorite shows and memorizing data from every documentary about prehistory Britain. These are marketable skills, right?

Becoming home-bound was always one of my greatest fears, but last year I could see it coming closer and closer on the horizon. I always read stories of Spoonies who were home-bound and I thought “No way. No how. Not me. Never ever.” Alas, here we are. I often wondered how they managed it and what they did. I’m a workaholic and an over-achiever, and going from spending all of my energy working and thinking about “what’s next” to being home-bound has been a shock, though I am slowly getting accustomed to it. 

I am trying to adapt my habits, goals, and interests to this lifestyle. If I do not adapt them, I lose my sense of self and the sense that I am accomplishing anything. One of the biggest hurdles with adapting to being physically limited is adjusting your definition of success and productivity. You can keep your expectations too high and then live in constant frustration that you can't reach that bar (note: almost every post on this blog). Once you can learn to live a life within your physical means, then you can finally feel like you're making progress and contributing to the world again. There’s a learning curve with this and I’m still making the climb to the apex.

Making a routine and some goals is an effort to redefine my boundaries. When I was in school and working, I set goals in my planner every week. Now I’m setting goals to achieve what most people can do in their sleep, Sometimes molehills really are mountains, and that's ok. The key to making a routine and setting goals for the chronically ill is to make them specific enough to be achievable though nebulous enough to adjust to the chaos and interruption of illness. This is no small feat. I tried to create a routine based on what I know that I can achieve yet leave some wiggle room for the inevitable crashes that happen throughout the day:

-Wake up 8:30 or earlier

-8:30-9:30- eat breakfast and wake up, get all medication down (half to 1 spoon)

-9:30-10:30 exercise or meditate or walk (1-4 spoons)

-10:30-11:30 get ready and do some cleaning, rest (2-3 spoons)

-11:30-1:00 complete any medical business, eat lunch, rest (1 spoon)

-1:00-3:00 creativity time- write, play music, read, draw (2 spoons)

-3:00-4:00 keep going with creativity or clean, rest (1-2  spoons)

-4:00-7:00 spend time with husband, make dinner, rest (1-3 spoons)

-7:00-9:00- exercise if haven’t already, shower (2-4 spoons)

-9:00-11:30 watch documentaries or read and rest, meditate if haven’t already (half spoon)

This is still an idealized version of my daily routine. Often, I’ll get ready and try to clean a little and my energy is maxed out so I lie on my couch for an hour or more to recover, especially if I try to do something crazy like vacuum. My problem as a recovering workaholic is that I am always pushing myself way too hard, all day long. I included rest throughout as a reminder to sit and recover from each activity (otherwise, I’ll get to spend the day bed-ridden) and so that rest still counts as being productive. As I’m lying face down on the couch, I can still be kicking productivity’s ass. Honestly, not a day goes by that I don't think by the end it "Yep. I did way too much." It's a slow climb indeed.

I try to do most of the cleaning. I figure that is my contribution since I am not working, yet I have varying levels of success with it. I do some sort of physical activity every day, even if it’s just a short walk with my trekking poles. Exercise, for me, is the only way to get a return on investment for my spoons. Someday, if my body can reclaim a higher spoon allotment, I can add more to this routine. Something crazy like drive across town or go to a store. Big dreams.

I made some short-term and long-term goals. They include things I’ve been working toward already, things I have lost over the last year that I want to reclaim, and dreams I have yet to make happen:

Weekly goals: (make specific weekly goals in planner)

-Try to get at least one blog post up

-Practice at least 2 hours a week

-Try to finish one book a week

-Drive a little farther and farther every week

-Stationary bike 4 days a week, try to walk every day, do some physical therapy exercises most days

Monthly Goals:

-4 blog posts a month minimum

-Learn a new song and at least one new scale a month

-Complete one piece of artwork a month

-Learn at least one new recipe

-Read at least 3 books a month (depending on length)

-Be able to get on my stationary bike for longer (work toward more than 10 minutes)

-Try to do at least one major cleaning or organizing project 

-Start driving with some regularity again

-Plant some flowers and maintain garden

Long-Term Goals:

-Submit some blog writing to online publications

-Continue researching and start planning book
-Take an online teaching class

-Start regularly giving friends artwork

-Work toward performing again

-Re-learn the bass cleft and more complex chords and scales

-Be able to drive to my parents’ and friend’s houses again

-Be able to go to a store solo again

-Exercise at least 5 days a week

-Try trips to nearby places (hello Yosemite!)

-Walk past the yellow house and back with my trekking poles

I tried to break down these goals into manageable increments. I need to make a more specific exercise plan so I can keep track of all the physical therapy exercises. I’m trying to reintroduce some things I have been struggling with the last few months (playing music, driving, leaving the house). I haven’t been able to travel anywhere besides for appointments in an unmentionable amount of time. That’s one of my biggest dreams. That and performing again.

Even if I am not able to stick to my routine and don’t attain all of my goals, I at least can feel like I am working toward something tangible again. I didn’t include any medical stuff in this list because I’m carving out some kind of identity outside of that insanity.

Even as many of us are living the dream of spending a good portion of our time horizontal and semi-conscious, I think it’s still valuable to hold onto our passions and goals. Illness will take much from you but it doesn’t have to take everything. I hope this is helpful to anyone out there, especially to those who are also home-bound or physically limited.

And guess what? I’ve already met some of my goals: I have hit 10 minutes a few times on my stationary bike, I’ve gotten a blog post up every week this month, and I planted my daffodil bulbs, (with husband’s help but it still counts). Bam! 

These little flower nubbins make me ridiculously happy

I hope you are reaching your goals despite your own battles :)

Keep up the good fight,

Stefani 

Surviving the Holidays

 A sense of panic starts to awaken around October, as Christmas decorations start furtively replacing Halloween decorations and the realization that the holidays are upon us. When you are chronically ill, the holidays offer added stress and panic. In the online communities I’m part of, I have already noticed the anxiety levels increasing with questions like “How will I prepare a meal?” “How do I get my house ready for guests?” “What do I talk about?” etc. My anxiety about the holidays started in September. Spoonies are great at finding solutions in difficult situations. We’re professional survivors, so I think it’s safe to say that we can find solutions during the holidays as well.

Holiday gatherings and parties are taxing for anyone, but for Spoonies they are especially challenging. For me, this year will be different. I’m not working and I have become home-bound. I have been able to do less and less over the years, but this year will be all about survival. My biggest concern is the New Year’s Eve party my husband and I always have at my parents’ house every year. Throwing a party is out of the question for me at the moment so my husband will have to do most of the work unfortunately, which he understands. Sometimes, this is reality. My goal is to be able to show up for the holiday gatherings and this party. If I can accomplish that, I’ll be over the moon.

Here are some suggestions to consider for the holidays and I would love to hear if you have other suggestions:

1.  Plan Ahead
I’m sure many of you are like me: I have a very careful plan whenever I leave the house and I try to prepare for all contingencies. This may mean bringing medication, mobility aids, fluids, etc with you.  If you are going to a friend or family member’s house, you may need to discuss your needs with the host or your family members. You may need extra care during a gathering but no one will know this unless you communicate it.

Maybe you’ll have to break up your preparations over a few days because you know that trying to do it all in one day will mean you can’t enjoy yourself or you’ll end up bed-ridden. You can even make a list or a plan for yourself if that helps.

If you have to travel, have your emergency supplies on hand with you. I have a giant purse that has water, salt, meds, and protein in it at all times. Prepare for the worst and hope for the best. You know how many spoons you have so conserve and use them judiciously.

If you are spending the holiday alone, as Spoonies must do sometimes, prepare to have a restful and enjoyable day. Do something for yourself and know that spending time alone means you can celebrate on your own terms and manage your health without extra stress or pressure.

2.  “What do I say?”: Listen

I saw someone mention this and I often ask myself the same question. I’m not working, I only leave the house for appointments, I spend most of my time managing symptoms, and I’m re-watching Downton Abbey for the thousandth time. What do I have to discuss with anyone? Sometimes illness can be the elephant in the room when you are with friends and family, but it does not have to be a focal point. You only have to discuss whatever you feel comfortable with.

Although some Spoonies do not have a vibrant external life, this often strengthens a person’s internal life. Whenever I think of this exchange, I think of Emily Dickinson. We still have much to share.

It can be difficult to not feel sad or even resentful when you hear others discuss working, traveling, or exciting social lives, but holding to this negativity will never lead to happiness. These feelings can take us out of the present and make us feel worse about our quality of life. I have found a lot of joy in just listening to others discuss what they are doing and living through those experiences vicariously. I think illness has given me the gift of being a better listener and living more in the present. This can make you more compassionate as well. Share your ideas and thoughts and enjoy listening.

3. Ask for Help

This reiterates the first point. If you know that an activity or condition will sink you, ask for help. Maybe you’ll have to delegate cleaning or cooking. Maybe you’ll have to explain your dietary needs. Asking for help is anathema to my nature, but I’ve learned the hard way that every time I didn’t ask for help when I should have, I ended up not succeeding.

Don’t set yourself up for failure. You know more than anyone else what you are capable of and your limitations so communicate this. Hopefully you have people in your life you can rely on and trust so you can communicate that this time of year is especially challenging because they may not know this.

I have a very specific diet, so sometimes I bring my own food or eat before a gathering. Maybe you’ll need to bring a chair to sit in. Do whatever you have to do. It’s easy to ignore our own needs to maintain the appearance of functionality or to not create distraction, but your self-preservation is the utmost importance. Going to parties and being part of celebrations is a rare treat for many Spoonies, so do whatever you have to do to enjoy it.

I’ll be bringing a blanket to our NYE party so that I can lie down in one of my parents’ rooms throughout the party because I won’t make it otherwise. I’m also going to adjust my medication schedule and hydrate all week to see if I can last for a few hours. I’ll put on a smile and do my best to enjoy it.

4.  Celebrate

Maybe the overwhelming stress, the sight of singing Santas, and having to hear Paul McCartney’s “Simply Having a Wonderful Christmas Time” one more time is putting you over the edge, but it’s easy to lose sight of the fact that this is a time to celebrate. Find something to celebrate, whether it’s spending time with friends and family, cheating by eating food you normally wouldn’t allow yourself to eat, or getting to wear something sparkly. Carve out some celebration and enjoyment for yourself.

I thought the last two years were difficult, but this year was the most difficult year health-wise for me by far, but I feel like a warrior for surviving it. I know that I can continue to survive it. That’s worthy of celebrating.

Even if you don’t have anyone or many to celebrate with, celebrate yourself. If you can't go to a gathering, you can celebrate on your own terms. You made it through another year of battling illness with dignity and grace. Your strength is worth celebrating!

I wish you symptom-free days, chocolate, and lots of joy for your holidays. How are you going to enjoy yourself despite your illness?

The Spoon Theory

You might be wondering why I am talking about utensils in this post, but in the chronic illness community, there is often much discussion related to spoons and not because we all have a strange affinity for cutlery. 

For the chronically ill, it is a battle to perform all the necessary daily tasks (and maybe even some tasks you want to do) within the confines of our limited energy and physical strength. The only way I can describe this to the non-chronically ill is to imagine the worst flu or illness you’ve ever had. You’re sick in bed, exhausted, in pain, you can’t stray too far from a bathroom, yet you are supposed to complete all your typical daily tasks (such as going to work, taking care of children, going to the grocery store, etc). Yet, even accomplishing one of these things is impossible. So even for those who are healthy, you’ve experienced what it’s like to live with limited spoons. 

For the chronically ill, this is what your day to day life is like except it will (for many of us) never go away. Postponing important things until you are flu-free and back to full health isn’t possible. “Spoons” are a metaphor for the limited energy those with chronic illness have and the decisions one has to make to “spend” them, often involving hard choices. Christine Miserandino created this metaphor while describing what her life with Lupus is like to a friend, and you can find her story here. She showed her friend 12 spoons and detailed how to spend them wisely to manage illness and disability while trying to live a full life. Often, six spoons may be needed to manage symptoms a day so six are available to complete daily tasks. The chronically ill and disabled have to choose wisely how to spend those spoons. If you use more than your allotted spoons, you pay for it by losing spoons the days after.

This metaphor has become essential for those who are ill and even those who aren’t to understand the struggles and triumphs of managing illness while trying to live. Like most self-defined labels, “Spoonie” is a term claimed by many as a form of empowerment, understanding, and self-expression. The term connotes a sense of pride and a sense of community. When I tell my husband “I’m out of spoons,” he knows exactly what I mean (though he often tells me “why don’t they say batteries instead of spoons?” he still gets it). Whether you are chronically ill or not, anyone can be initiated with this metaphor. 

This last week for me was a good example of how I live with limited spoons. Miserandino described 12 spoons, but over the last six months as the likely-though-unofficially-diagnosed Myasthenia Gravis combined with POTS is making me often immobile and barely able to leave my couch or bed, I’ve been living with 3-4 spoons a day. It's not enough to do the things I have to do (showering, getting dressed, eating, etc) and the things I should do (clean and exercise). This doesn't include the things I really want to do (play music, leave the house, see friends and family, cook, bake, paint, skydive). Ok, skydiving is not a goal but I like to dream.

Is it possible to get more spoons? Exercise, for me at least, is the only thing that gives me a return on investment for spoons. Deconditioning and exercise intolerance are very common for POTS and MG, but it is important to maintain strength and stamina. I’m a former athlete and have always been active, and exercise has often been more beneficial to me than any medication I’ve ever taken. I reserve spoons for it. I'm also supposed to be doing physical therapy right now, which requires at least 2 spoons.

So I have to choose very wisely. A few months ago, I told my husband I wanted to bake something so he asked me to make some ranger cookies. Since life isn’t worth living without chocolate, I found a recipe that included some. He bought me some ingredients and I printed the recipe.  I wanted to do this for him since he is a fantastic caregiver and I rarely get to do things for him. 

Those ingredients sat in the bag in my kitchen for two months because I couldn’t muster the energy to make them. This week, finally baking them was one of my goals. I saved some spoons and made them (while sitting of course). Having Dysautonomia means you and gravity are frenemies now. But you can be fabulous and cook, bake, teach, sing, anything else while sitting. Although I had to lie on my couch in between batches to recover, I felt badass and accomplished, and he loved them. I overspent on spoons but it was worth it. A crunchy, chocolate-y success.

Husband-approved cookies. Yes, the beard is real

I mentioned in a post last week that I was supposed to go to Stanford this week for an important test (a single fiber EMG) so I could finally get a likely diagnosis for Myasthenia Gravis. I can barely leave the house at all right now so traveling 2.5 hours each way for this trip was going to be a massive endeavor, even with my husband’s help. A trip like this could take 15 spoons, especially since my reward for getting there involves being stabbed with a needle repeatedly. I booked us a hotel to make it a two day trip to make it more manageable. I also had to stop taking the Mestonin I recently started taking (a drug that treats MG and has been used off-label to treat POTS) for this test. I’ve been having difficulty breathing for some time, but along with other symptoms, it has been worsening over the last few months. I’m taking a miniscule dose of Mestonin but it is doing wonders for my breathing issues already. 

When I stopped taking it, the breathing problems returned full force. Not being able to take this medication cut into my 3-spoon-a-day allotment. As soon as I opened my eyes on the day we had to leave, I knew it was going to be a 1-2 spoon kind of day. I was in trouble. I tried to lie in bed for hours before we had to go. We put off leaving as long as possible, but when it was time I knew there was no way. The glorious effects of the Mestonin had worn off and I was looking at having 0 spoons on a long day of traveling. 

The test is rescheduled for a month from now and I’m crossing my fingers I can gather enough spoons to get there. Maybe I'll start a kickstarter campaign for people to donate spoons.

These are examples of the difficult choices and constant measuring of cost to benefit ratios Spoonies have to make. I have been living with POTS for years now, but I’m still learning how to live within my capabilities and limitations. There’s a learning curve with chronic illness. I rejected my limitations and fought against them, but I’ve paid dearly for that folly. The spoon theory has helped me understand that I have to live a life I am physically able to live, not the ideal one I would rather be living. 

Living within your spoon allotment lets you live a fuller, authentic life. I recommend explaining this metaphor to those close to you so they understand that despite your limitations, you are doing the best you can. Forks, knives, spoons, whatever, we’re chronic illness warriors, living bravely and with dignity. Use your spoons to live the fullest life possible.

A Spoonie created a choose-your-own adventure game based on the spoon theory that I highly recommend, especially for non-Spoonies, to understand what it's like to live with chronic illness. You can find it here