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Become a Leader

Are you a leader? Have you wanted to be one, but didn’t know how? Or does that thought terrify you?

For some people, the idea of being a leader is appealing. For others, it strikes to the core of deep anxiety. As Uncle Ben once said to Peter Parker, “with great power comes great responsibility.” Leading is a source of power, and because of that, it cannot be tackled lightly. It is why, for some people, it creates anxiety, as they recognize this responsibility. 

But anyone can be a leader, and sometimes you become one without realizing it.

A leader does not need a large group of people, and in fact, they don’t need a group of people at all. You know the phrase “lead by example?” Sometimes living your life on your terms with your chronic illness is enough to become a leader.

I found in my chronic illness journey, even before I blogged about it, I answered questions. I set an example of living with a chronic illness. Looking back, I wasn’t particularly good at it, but I’ve hopefully improved.

Since starting my blog, it’s led to me answering more questions about MS and living with an autoimmune disease. I answer questions about my diagnosis as someone else struggles to figure out what’s going on with their health. 

Without intending to become one, I am a leader within my social groups. I don’t say this with expectation; it’s just a fact. People look to me to provide them with answers and recommendations. When I realized this happened, I recognized I needed to take the role seriously and understand all that goes along with leading. 

The key to effective and stress-free leadership is knowing when to lead and when to follow.

When to Lead

There are many situations where it’s appropriate to lead: healthcare, life, and social scenarios are a few. Besides your own life, in any form that may take due to your illness, the most crucial space you lead is with your healthcare. You cannot help others, nor can you help yourself if you are not a strong advocate for yourself.

You know your body better than any doctor. You know exactly how you are feeling, even if you do not have the words to describe it. I am not saying to reject what doctors have to say or ignore their training. But, if they dismiss you when you know something is wrong, you have to advocate for yourself.

You have to lead and assert your needs, wants, and concerns. If you anticipate resistance in the doctor’s office, find resources that can help you state your concerns so you feel heard. Be respectful to start, but increase your assertion if your healthcare professional brushes you aside.

Another space that calls for leadership, intended or not, is deciding what’s best for you and how you approach your illness. What this means is there will be times when you reject social get-togethers, leave early, or cut off relationships because you must care for your health first. Find ways to say “it’s okay if I put myself first,” as much as possible. 

People will understand that health must come first, and if they don’t, those are the first relationships you should examine.

Often, I find people respect it when I say to them that I must engage in self-care. I still struggle to pre-emptively articulate it to others. With a simple explanation, I can express why I am quiet or declining social events.

Taking a leadership attitude provides an example to others who may be struggling with their chronic illness. You may learn about their disease, and you may not, but people will see that you are taking control of your life. It may provide them with the strength they need to manage all that’s going on. 

When to Follow

You may prefer to follow, or at the very least, “not lead.”

But for some of us, myself included, the idea of following is like nails on a chalkboard. I’ve gotten better through experience to stand aside and let others guide. When it comes to my own life, I prefer to be the driving force

Of course, it should be this way. Still, there are times when I must take a backseat, even in my own life. 

I am about to contradict myself in the same post: we know what’s best, but sometimes we don’t. We may fundamentally understand what we need, but we refuse to follow it. There are times where we must listen to others to care for ourselves. We must follow their advice and suggestions because we aren’t honoring our needs. 

When we step aside and let others lead, it can be humbling. It can be humiliating. It can also give us a break from decision-making. Still, it’s vital to know how to balance leading and following. Don’t let someone take over all the decisions, especially if they are ill-equipped for the role. 

In a nutshell, know when to take control and when to accept help.

Leading and Responsibility

If you are a leader, whether you asked for it or not, you have a responsibility. While I will explore this concept in more depth on Wednesday, I wanted to take a moment to speak to it now.

The moment you reveal your diagnosis in a public manner, you become a leader and “go-to” advocate for your disease. Remember all the times you approached someone who had experience with something you were curious about? Unwittingly, you made that person your “go-to” resource for information. 

It is the same for you now. People will message you with questions, not necessarily to be nosy, but because they might be experiencing symptoms. Each time they search online, the sites point to your disease. You become the de facto expert.

Because of this, you have the following responsibilities. I will examine this list further on Wednesday.

  1. Clarify that you are not an expert and that you can only speak to your experience.
  2. Provide correct and objective information.
  3. Give an honest account of your experience. 
  4. Answer questions, no matter how poorly worded, with compassion. 
    1. To clarify: people may ask questions crudely and offend you with the wording or implications made. Assume it is unintentional (otherwise will stress you out). Re-frame your response to reflect an “askee” who is scared and does not understand how they are coming across.
  5. While you may be a perceived leader, you do not owe answers to anyone. Feel free to decline to answer invasive questions. 

Sometimes we intend to become leaders, and sometimes we stumble into it. Become a leader in your life with your chronic illness.


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A Higher Power with a Chronic Illness

Approximately 84% of the world’s population is religious in some way. The number may be lower if we compare those who say they are religious, versus those who actively practice. It is safe to assume that the majority of the world has some sort of religious background. For many people, when dealing with a crisis or celebration of some sort, they reach to a higher power. This higher power connects humans to one another, reaffirms the community bond, and provides comfort in times of need. When dealing with a chronic illness, sometimes that higher power provides the strength needed to cope.

For September, the MS Mommy Blog will discuss the advantages, and at times the disadvantages, of having a higher power during a wellness journey. If you have one deity, more than one, or none at all, you’ll find that I will touch upon your situation at least once this month.

A Quick Disclaimer

If I linked you back to this post, it’s because of the following disclaimer.

The MS Mommy Blog takes a strict stance of not promoting one particular religious practice over another, nor will it disparage a specific system of belief. If I take lessons from one philosophy more often than another, it is not an endorsement.

Because this month will have a lot of conversations surrounding religion, I will be as broad and general as possible to be inclusive. If I do use specific examples or terminology associated with one particular religion, it won’t be to promote it over another. This has everything to do with the limitation of the English language and tap into Western cultural shortcuts.

All examples will be done in an honoring way: I will not criticize any particular system of belief. I will, however, address some of the mental traps we fall into as a result of religion, not because of the religion itself. This might be perceived as a criticism, but please do not take it as such.

To be all-encompassing, I will not be using the word “god” in any capacity. Instead, I will use the term “higher power” or “greater cause.” If you have a particular deity, that is your higher power. If you are not religious or an adherent to a traditional belief system, you might have a greater cause that you focus on (see humanism as an example of what I mean).

Looking Beyond Ourselves

Often, at the start of any wellness journey, there’s a call to look beyond ourselves. We might reach out to our higher power to help us start or give us the strength to move forward. Being afraid to try something new, no matter how beneficial it may be, is reason enough to need strength from wherever you can get it. If you are not religious, you may look for other motivations: a child, a partner, or just for yourself.

Whatever the reason, we are looking within to look beyond.

The act of asking a higher power for strength or finding a greater cause allows us to reflect on our life from an objective perspective. We can see ourselves as others see us, and see where we might need an extra boost. Then we can ask for help from our higher power, or see resources related to our greater cause. The act of asking for help is a form of externalizing our desire and can help propel us forward.

I often find that looking beyond myself helps. It’s usually in the form of providing an example to Jai, I see what I want him to do, and therefore, I must model my behavior, so he follows suit. I am looking beyond myself to make changes in my wellness journey, and I find more success because of it.

Finding Motivation Beyond, Maybe

If you grew up in a particular system of belief or are newly converted, you know what works for you. If reaching out to your higher power gets you the answers and comfort you need, then do so. But make sure whatever response you get back is honest and healthy. Sometimes we get a specific response (or lack of response), and it may not be our higher power, but our unconscious getting in the way. That’s the “maybe” in this section’s header.

If you are not receiving comfort or an answer encouraging your personal wellness, seek out a second opinion. Find a leader you trust within your belief community and seek counsel. Understand that they are fallible too, but your higher power should want you to be strong, find comfort, and be healthy. Your leader should help you get a more honest response that isn’t muddled with unconscious and discouraging thoughts.

No Excuses

Here’s where I am going to get controversial: do not use your higher power or greater cause as an excuse not to make positive life changes to manage your illness. Really think about what your higher power or greater cause asks of you. One that wants you to be healthy and managing your illness in the best way possible is reasonable. One that asks you to stay stagnant and be unhealthy may not be your higher power, but your own unconsciousness afraid of change.

If you find that after speaking with your higher power, it gives you an answer to stay unhealthy, you may need to seek outside counsel to get to the source of that answer.

Higher Power & Chronic Illness

So how can a greater cause or higher power help you with your chronic illness? That’s something we’ll be examining for September. You may have one, and you may not. Whatever works for you and keeps you motivated and feeling happy – that’s what matters most.

Your wellness journey is your own, and ultimately, you need to stick with what keeps you moving forward healthily.


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Coping with a Setback

It’s tough to cope with a setback. Setbacks stink, and they, well, set us back. How often have you started with a specific goal in mind only to find that something gets in the way of completing it? It might be a person dragging their feet on a project, a health obstacle, or poor timing, so it doesn’t work out.

Every Sunday, I set a small goal for myself for the week: complete my chores each day promptly so I might spend more time with Jai. I might start off strong, get ahead by two days on Monday only to have something happen Tuesday and Wednesday to get me rushing to finish my chores if they get finished at all. As the week marches on, I get farther and farther behind on my tasks until its Sunday again.

It never seems to fail that each time I get two steps ahead, something sets me four steps behind.

It’s frustrating when this happens. Every time I set a goal for myself, with or without expectation, something gets in the way. The trouble is, it isn’t every time that this happens. It only seems like it due to negative bias. But often it’s enough to leave me to feel discouraged that I am getting nowhere near achieving my personal goals.

The Source of Setbacks

When I recognize that I am slipping down a discouraging path with a setback, I try to reach a space where I can understand what is happening. Some delays are out of my control: the car needs an oil change, and thirty minutes last two hours because the car is due for a maintenance check. In this scenario, I have a choice to make: deal with the issue at hand, and get the car checked out, or skip-it and allow a possible issue fester into an expensive problem.

I choose the setback because I know not dealing with the critical task at hand, maintaining the health of my vehicle, can cause more stress in the future. Yet, time was lost that I planned to devote to something else, and that feels frustrating.

Another source of the setback may be of my own making, typically through self-sabotage. I am aware enough to know that I am the source of it, yet sometimes I continue to engage in the self-destructive setback. This may be dropping the ball on a project, not responding to essential communications, or participating in toxic behavior to avoid dealing with the situation.

When I get a setback that is out of my control, I get more frustrated. When I create my own impediments, I have only myself to blame. I can choose to change my behavior to have a favorable outcome. But when the setback is external, I get more discouraged because I don’t know how to fix it. It’s out of control, which makes me feel out of control.

But I am learning how to better deal with it.

Self-Compassion and Gratitude

When I feel out of control, especially amid a setback, I have to find a healthy way to control the situation. There is only one thing I can control, and that is my reaction to the setback. Through this, I can manage the next couple of steps I take. This is my response, how I deal with my response and deciding what my options are.

Depending on the scenario, a setback might feel like a permanent roadblock, but it does not have to be. I have options for finding a way around it. If I react like I’ve hit a dead-end, I won’t try to find an alternative. If I respond like I can turn around and try a different path, I am more apt to consider my options.

And sometimes a shut door is a shut door. There is wisdom in knowing that there are no other options over assuming there are no alternatives.

To healthily manage my reaction to a setback, I engage in self-compassion and gratitude for the situation. I tell myself, “it’s okay that this might not be your ideal situation, but you will do the best you can with it.” I follow it with gratitude that I am given a chance to learn more about what I can do. Adversity, via setback, is often the best tool to teach us about ourselves.

I don’t seek out setbacks, nor do I martyr myself in the middle of one. Rather, I take the “life gives you lemons,” approach: if I am stuck dealing with it, might as well make the most of it.

Despite what it sounds like, I don’t believe life purposely sets out lessons for us. The lessons are always there, it’s just a matter of, are we listening to them? Setbacks are one of those lessons we can’t avoid, so we should look to them not as keeping us back, but teaching us patience perseverance, and humility.

Each setback isn’t an addition to a lesson, it’s just a chance to deepen or refresh what you’ve previously learned.

Maintaining Focus

There isn’t one ideal way to handle a setback. But I have found one thing, besides self-compassion and gratitude, that helps me get through it: maintaining my focus.

A setback often derails us mentally and emotionally. We might want to complete a particular task this week, and an injury prevents that from happening. Rather than focusing on the injury beyond healing, focus on what can be done in the meantime.

Keep yourself focused while moving forward.

Sometimes it hard to keep that focus if it’s a long-term setback. If that’s the case, consider re-evaluating your goals, if only temporarily. Refocus on another goal that might help you achieve your sidelined goal. Look for alternatives, but keep yourself focused on moving forward rather than staying stuck in one place.

Respecting the Setback and Ourselves

The key to dealing with a setback is respecting the lessons and our ability to listen. Delays aren’t inherently a bad thing, though they do get a bad rap. They are frustrating simply because they put a pause on our expectations, and makes us feel stagnant. Yet, a setback can be a good thing.

I view setbacks as an opportunity to take a break. When I create the hindrance, often it’s because I am doing too much and not listening to my need to slow down. I unconsciously self-sabotage because it’s the only way I will listen to taking a breather.

When the setback is out of my control, it allows me to regroup, figure out what happened, and decide on my next step. Delays will enable us to take the time to reassess what is going on in our lives, especially if we usually don’t give ourselves permission to do so.

It is hard to cope with setbacks, but we can and will each time we experience one. And that’s okay.


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Setting a Positive Example

I haven’t had a parenting post in a while, so it’s time for one. If you are like me, and a parent with a chronic illness, thoughts of “how can I be a better parent” come up in moments of self-reflection. A constant concern I have is, am I setting a positive example for Jai? Am I being a good mother, especially in the moments my illness seems to take over?

I feel like there’s a lot of expectations placed on mothers, especially on how we project ourselves in public and private. When we have moments where we are vulnerable, we get frustrated. Coupled with a chronic illness, especially invisible ones where society forgets we are ill, it’s easy to feel overwhelmed.

For myself, in the moments I feel overwhelmed, I feel like I struggle to set a positive example. With my MS, I feel obligated to set an example about the importance of handling things out of our control in a positive way.

When we have a Little Clone

It isn’t always the case, but have you noticed being closely aligned with a parent in personality? More like your mother or your father? Or a nice blend of both? If you are a parent, you may notice your child favors you or your partner more in personality.

This may be frustrating because two strong personalities in the same home is a recipe for conflict. But it can be a wonderful bonding experience if approached properly. The parent whom the child favors is able to identify personality quirks and be sensitive to particular needs. Rather than being an adversary, the parent can be a valuable alley within the home.

When a child is similar to us, it’s a wonderful opportunity to see our own behaviors in their purest form. Children can provide a deeper insight to ourselves.

I find that Jai teaches me how to behave better. Observing his interactions on the playground, he does not get upset when another child steals his toy. Rather than getting upset, he’ll move on to another toy. It’s an opportunity for me to learn from his wisdom: focus not on the loss of the toy, but the opportunity to do something else.

I recognize his behavior is age/developmentally based. In a few months, he may not behave so passively in a similar situation.

In those moments of adaptability, I encourage his behavior. Likewise, I want to make sure he doesn’t pick up my bad habits. Rather than swooping in and letting Jai know that something negative happened, I try to be as non-reactive to keep the situation calm and under control. My instinct is a bad habit developed over the years: take the toy back while reprimanding the offending child for not knowing how to share. This teaches Jai to be aggressive in a negative way and I don’t want to encourage that.

If Jai is upset over losing something, it is better I show him how to ask for a toy back in a nice manner, rather than fight bullying with bullying.

Setting a Positive Example to Children

Children, even in their worst moments, provide us with valuable insight to our own behaviors. They observe our every moment, behavior, and style of speech. A few weeks ago, when I braked the car suddenly, I heard from the backseat, “what are you doing?” directed at the driver causing me to brake.

I knew in that moment I needed to be more aware of the language I used while driving around the city.

Consider this: next time your child behaves in a manner you find problematic, step back and see where that behavior was modeled for them. Was it from you? A co-parent? A secondary caregiver? School? If you find that it is a reflection or response to your own behaviors, consider finding a way to change it so you model the behavior you want your child to have.

This might be particularly difficult to achieve with a chronic illness, but it is still possible. Use your illness as a teaching moment: sometimes we cannot control our own behaviors because of an exacerbation, but we are doing the best we can with what we have.

When you mess up, rather than ignoring it, sit down with a child and explain what happened. Do not excuse it. Provide a reason to your thinking and behavior, or admit you don’t know why. Walk a child through how you plan to approach the situation in the future and acknowledge that you may not remember/achieve it the next time. Admit to your imperfection, and reassure the child that it’s okay to be human but not okay to hurt others. Finally, make sure you apologize to your child if necessary.

Treat your child, no matter their age, like the human they are with all the respect that goes with it. You’ll find that the example you set, no matter when you start, will eventually payoff with some patience and compassion on your part.


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Featured photo credit: Michelle Melton


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I Hate Self-Improvement

We’re finally addressing what I’ve thought many times and I’m sure you’ve too: I hate self-improvement.

We can pack everything up. Everyone head home. The blog’s done. Everything’s been said that needs to be told and we can move on with our lives. It’s been really nice taking this near two-year journey with you.

Okay, we all know I am joking. I still have lots to write about, and I am not ready to finish. But let’s take a moment to acknowledge this truth: self-improvement stinks because it moves us into a space of feeling uncomfortable. As discussed in Monday’s post, Bishop writes about our tendency to be risk-averse when confronted with going outside our comfort zones.

Self-improvement only comes when we get outside our comfort zone and acknowledge that what we are doing is not working. When we stick to our ruts, we do not grow. When we stop growing, we are more susceptible to dissatisfaction.

Chronic illness does a lot to keep us in our place. We feel a lot of pain wrapped up in the diagnosis. Every day is a fight to manage our health, our time, and our lives. Asking ourselves to take that extra step to make simple improvements can feel unreasonable.

Settling into a mindset of hating self-improvement is easy. And that’s okay, you can hate it. You can hate it in the same way you hate exercising, but know you should take a few minutes a day; hate eating a particular way, but know it helps you feel better; and hate taking your disease-modifying drugs, but they keep you stable or alive. No one is saying that saying to make self-improvement changes with a smile on your face.

I refuse to believe people who make self-improvement/self-help their life don’t have moments where they hate what they are doing.

You may hate exercise, eating a certain way, or taking your medication, but you know you need to in order to feel and get better. The same with self-improvement. You can hate it, but it is good for you all the same. Remember this: making simple improvements can help you better manage your illness which is what I am encouraging you to do.

The Problem with Self-Improvement

Self-improvement takes us all down the same path. The scenery may look different, but the concept is always the same: figure out what we want to change, work to change it, deal with the challenges, then recognize there’s a roadblock we need to address before moving forward.

When confronted with that “roadblock” it can stop us in our tracks because it’s distracting, makes us feel bad, and seems insurmountable. It may even be something we’ve spent a lot of time avoiding. We don’t like it and want it to go away. But confronting this roadblock head-on will help get it to go away, or at the very least, get it to have less of a hold of us.

We must confront it to find success.

Let’s say you are trying to quit smoking. In the process of trying to stop you discover there is a pleasure you get because it reminds you of your grandmother who smoked. Smoking, on some deep level, is a connection to her. When you give up smoking, there’s a sense of that connection is lost. That might halt your desire to quit: you don’t want to lose your grandmother.

But the reality is this: you need to quit to improve your health, and smoking across the board exacerbates chronic illness symptoms. The same is for self-improvement: we need to make changes because what we are currently doing might exacerbate our symptoms.

I Hate Self-Improvement

2019’s been good so far, but I haven’t enjoyed all the aspects of self-improvement. I enjoy how my mood’s improved, the improvements I’ve seen, how I feel, but I wouldn’t say I’ve enjoyed the self-improvement. But it’s been tough to get to this place.

I dislike self-improvement. It’s an exercise like my running and it’s not easy. I was saying to Ash the other day how I want a mental and emotional break. But if I stop doing my mental/emotional exercises, if I “take a break,” I will revert back to my old way of doing things. A “break” would be tantamount to a backslide and I don’t want to do that.

For the record, self-care and a break would be two different things in this situation. What I need at this moment are self-care and self-compassion. A break would be halting self-improvement because it’s gotten tough.

If I want to be a less judgmental person, I have to push through those moments where I want a break, I want to give up. If I want to eat healthier, I have to resist carb-overload temptations. I have to fight my natural tendency to want to give up when the going gets tough.

Working through the Dislikes

When we spend time self-reflecting, we see things that we want to change. If you subscribe to my newsletter, you know that last month I asked readers to come up with five things they love/like about themselves and five things they dislike/want to change.

Take a few minutes to list out five things you dislike (do not use the word hate) about yourself. It can be anything and should be the first five things you think about. If you overthink about it, you dismiss your unconscious voice, and that’s who you are trying to listen to in this exercise.

Once you’ve developed this list, keep it somewhere safe so you can pull it out throughout the month. We will hopefully find a way to address your dislikes in a healthy way. But this month will be about working through your dislikes.

Beauty in Imperfection

As stated at the beginning of March, there is a beauty that grows from the mud. We want to look at those dislikes, perceived imperfections, and parts of us we want to change and honor them. Sure, we will work to change them, but it’s these imperfections that make us beautiful and unique. Even our chronic illness.

A preview for what’s to come: if you are a subscriber to the weekly newsletter we’ll be addressing our inner toddlers. Because though we may not want to admit it, that toddler is still inside all of us.

May is going to be a difficult month. I will be addressing a lot of the dislikes I have for myself, my perceived “flaws,” and any doubts I have about myself. But like everything, I will get through it. We will all get through it and see the beauty in our imperfections.


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