leading-with-chronic-illness

Leading Others Along the Way

On Monday, I discussed how we inadvertently become leaders when we go public with our chronic illness diagnosis. We may not ask, nor want the responsibility, but it inevitably happens. Therefore, we face the questions: should I lead? Do I want to? and what example should I set?

Living with a chronic illness in the United States is becoming a more common occurrence. Because of this uptick, it is becoming more common to know someone affected with a chronic disease. Let’s reflect before your diagnosis for a moment: with your symptoms, did you go online and search for answers before visiting a doctor? If you knew someone with the disease in the results, did you approach them with questions?

So often, when I answer questions about my MS to those experiencing similar symptoms, do I hear how scared they are. There’s a desire for reassurance that they don’t have MS, or that it’s not a death sentence. People are seeking a connection with a person living with an illness that is not in search results. As someone who is out with my diagnosis, my role is to comfort and inform. 

I can, as can you, choose not to take on this role.  

We do not owe anyone answers about our illness. We can choose to refuse to answer, advocate, or inform about the disease. Yet, it is vital to be aware that when we go public with a chronic illness, we will continually field questions until others understand our stance on the matter.

If you choose to take on the role of “local” leader and “expert” on your disease, I wanted to write this post with you in mind. 

What are my Responsibilities?

If you’ve decided to be public with your illness and accepted a leadership role, there’s a set of unspoken responsibilities that come with it. I spoke briefly about this on Monday. I wasn’t aware of all of these responsibilities when I first started blogging about my MS.

As I went along in my journey, I saw good and bad examples of advocacy. As someone out with their disease, it’s imperative you set yourself apart from those who are out for the attention. You will find that there’s always someone out there who is a poor advocate for your illness. They post sensational images on social media, only focus on the negative aspects, and do not take the opportunity to inform others about the disease itself (just that they have it).

They might be considered inspiring by others, too, but look beyond the sensationalism and see the truth: they are attention-seeking and not informing. Be more responsible and educate others about your illness. The ones who are flashy and irresponsible make more work for the rest of us, so it’s important you help the cause rather than hinder it.

I want to share the responsibilities we undertake when we go public with our illness and become a token advocate for others. 

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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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Appreciating the Small Things

One afternoon, Jai and I walked to meet Ash at work. In the middle of the walkway was a considerable Skink that I almost stepped on because I wasn’t paying attention. This was the second time I almost got this little guy because I tend to be single-focused to keep Jai moving along. Each time I almost step on the little lizard, I feel bad. They are just sitting there, on the sidewalk, appreciating the midday sun. As the Skink scuttles off to avoid my feet, I give a moment of appreciation for them. Here, in a major metropolitan area, is a reminder of nature and a moment to appreciate the small things in life.

Now that I am aware that this is the Skink’s favorite sunning spot, Jai and I keep a lookout for him each time we visit Ash. It’s an opportunity for Jai to learn more about his local ecology, and me to appreciate its size and coloring. With a toddler, each Skink-sized stick is our sunning friend, and each little Skink discovered is the big one’s “baby.”

Watching Jai get so excited over discovery is one of the sweeter moments of parenthood. These are the moments he and I treasure, but often get lost in daily life. I have chores to do, posts to write, and training to manage, that I often forget the importance of slowing down and appreciating the little moments.

Appreciating the small things in life is so integral to de-stressing and finding inner satisfaction.

Don’t Get Bogged Down

Appreciating the small things is not an opportunity to practice avoidance. Sometimes, we use little details as an excuse to procrastinate. Try not to get so bogged down in the minutia that you lose focus of your goals. You may even miss the more significant moments worthy of our appreciation when we focus too strictly on the small stuff.

That said, it’s essential to strike a balance between the little and big things in life. Take time to appreciate the moments you might overlook, but don’t let that consume you. On Wednesday, I will focus on the more significant parts of life worthy of our appreciation.

Grateful for the Little Stuff

How do you determine that something is worthy of appreciation? Why is it important to appreciate?

If the moment or experience strikes a positive response from you, it is worthy of appreciation. Looking at a cute dog walking down the street is an opportunity to appreciate living alongside our canine companions. Hearing a child’s unbridled laughter across the store is a moment to enjoy living in the moment like a child. Seeing a stranger do something kind for you or another stranger is a moment to appreciate the kindness in the world.

These are three moments we might miss or not devote the level of appreciation they deserve. If we want to rewire our brain, take the time to be mindful, and show gratitude in the small things is another area to start. Engage in the feelings a dog, child, or stranger brings up in you. A dog might make you feel good because of how cute it is. A child’s laughter might make you feel good because it reminds you of positive childhood experiences. A random act of kindness might make you feel good because it reaffirms your faith in humanity.

These are all moments of mindfulness. The small things in life tend to only happen in the current moment, so when they arrive, embrace these moments and appreciate life as it currently is. Not how you wish it would be, or your past. These little moments keep us from focusing on the negative that bog us down.

If we are busy appreciating the little things, we do not leave room to focus on the negative.

Take the rest of the day to find moments to appreciate. Observe others behaving kindly. Enjoy a stranger’s happiness. Give your companion animal an extra scratch and take comfort in the feel of their fur (or scales, or feathers).

Find some time today to appreciate the little things in life and see how they add up to the richness and positivity of your day.


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Kids as Self-Improvement Motivation

Kids as Self-Improvement Motivation

Monday, I talked about not using children as your main goal for self-improvement. Instead of working towards being a better parent, figure out why you struggle with the aspects you want to improve and work on that instead. Improved parenting becomes a secondary benefit when you feel better about yourself. So when I say, kids as self-improvement motivation, it feels like I am taking a step backward from Monday’s post.

But I’m not.

Because children are a part of our daily lives, they can also be a part of our motivation. Seeing your children born and grow may motivate you to become healthier to live longer. Or they reflect behaviors that you do but know needs to change. Their appearance in your life may be enough for you to say “I need to make some changes!”

With that in mind,  kids can work as self-improvement motivation.

A Clarification: Parental Responsibility

Before I go any further I need to make some clarifications and disclaimers to contextualize the rest of this post.

Your children are not responsible for motivating you. They do not create or affect your happiness or ability to succeed. Only you are responsible for yourself and your behaviors. Things in your past may influence your current behaviors, but you are responsible for your own actions. Therefore, your children are not responsible for your ability to make and achieve your goals.

What I do suggest is to use their natural behaviors and inclinations to achieve your goals. If you have a toddler it’s near impossible to keep them still, so if you want to exercise, try to take advantage of their energy.

Jai loves to exercise and run around the house. One of my short-term goals this year is to do more yoga. Why not combine his need to burn energy and my need to practice? Using his natural need to expend energy as a means to motivate me to exercise is using him as a motivator. I am placing no expectations on him, no responsibility, he doesn’t even know that he is helping me out.

Likewise, if you are looking to de-stress and improve how you react to your children under stressful circumstances, do not expect them to behave any differently. Look at how they react to you when you react to them. Sometimes seeing a look, that look, that they give can be motivating enough to work harder to avoid getting it next time.

You are placing no expectations on the children, no responsibility on them to help you through your journey. The only responsibility your children have in this journey is being their own, individual person, enjoying their childhood, and reaping the benefits of the work you do for yourself.

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