leader-life-chronic-illness

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.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Canva

Advertisements

finding-your-strength

Finding Your Strength

It’s time to ask for help. How do you do it? How do you find your strength to put yourself in the vulnerable position of asking others to help you? For some of us, when we reach a point of needing help, it feels like rock bottom. Like we’ve exhausted all of our options, and so we must look elsewhere to move forward. It can be emotionally draining.

But it isn’t a rock bottom, and we aren’t hopeless if we acknowledge we need help. We aren’t defeated, we are strong, and we will get through it with others.

We must find our strength to ask and to receive help.

Finding Your Strength in Connections

How do you find your strength to ask for help?

Often, we don’t want to acknowledge that we need to ask for help, yet every human needs a hand at some point. When you ask for help, you grow stronger. Your connections deepen, you might now understand a concept better, and you might get that boost you’ve needed to get ahead.

The struggle comes when you reach out and realize the extent of your social connections. Often we give to others, not necessarily expecting reciprocation. Still, when we need help, those same people are unavailable to help. I can’t count how many times I’ve put myself out only to have the friend ghost me when I need them

It’s discouraging and can interfere with asking for help. So, rather than thinking you can do it on your own, continue to reach out. If you get a lackluster response, remember that your friend might legitimately be unable to help you at the moment. If you suspect it’s because they are a taker, then you grow stronger, knowing the nature of your friendship. You can put them down your friendship mountain, and minimize the stress they caused in your life (hopefully guilt-free).

You want to surround yourself with friends and family who want to help make you stronger. Listen to you when you need them, and accept your help when you can give it. Don’t base relationships on reciprocity alone, but you want to know that it’s there when needed.

If you surround yourself with reliable connections, you may never need them for help. Still, it will make asking a little easier. It’s a good thing for your physical and mental health to surround yourself with positive people.

Help Me, Help You

The best way to get help from others is by providing them with efficient tools to help you. Figure out the best ways a person can help before asking. If you have a demonstrative and sensitive friend, they might be the best person to turn to for a good cry. If you have an emotionally distant friend who copes through humor, go to them when you need cheering up.

Play to your friends’ strengths.

Sometimes we know automatically what our friends can handle. If we are at a loss, ask them how they can help. Sometimes our sensitive friend is better as a chauffeur than a confidant. When you take your friends’ abilities into account when you ask for help, you respect their boundaries. You also minimize rejection or feelings of discomfort because you are sensitive to their strengths.

People want to help each other, but we also want to respect what they are comfortable doing.

Putting it into Perspective

When you find your strength, remember to maintain perspective. It’s hard to step outside of our chronic illness to recognize that someone else might be going through an equally tough time. While it may not be your responsibility to take care of someone else, you do want to be sensitive to what’s going on in their lives.

If I know a friend is going through a rough period and I am in need of some help, I will either turn to someone else or find a way to make the least amount of fuss. Often, I will make jokes about my own life to cheer them up, and in doing so, it helps me feel better. The help I need most often is a connection, and a friend can help me without even realizing it.

A friend may not tell me when they are going through a rough patch, so when they reject helping me, I try to remember my own experiences. I’ve had people need me while I’m coping with a minor exacerbation, and I’ve had to say “no,” to help them. I feel bad about rejecting them because I often feel like I could have helped anyway. But the point of saying “no,” was for self-care reasons. The same could be for a friend: they may be saying “no,” for their health. It is essential to respect that.

Remember that everyone is going through their mess of stuff, so when people behave a particular way, it has nothing to do with you. Take connections at face-value and don’t read into their reasonings, unless you know what’s going on for sure. You grow your strength from being resilient when friends can help you and the times they can’t.

We are all going through this journey together, so look to each other as opportunities to grow and mature by helping each other. You never know who might need that strength you model by asking for help.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Canva


book-review-waiting-higher-power

Book Review: Waiting: A Non-Believer’s Higher Power

I’ve never been Marya Hornbacher’s target audience. I’ve never had an eating disorder, never diagnosed as bipolar, and I’ve never had to work to overcome a substance addiction. The closest I can come to her experience is getting diagnosed with OCD and learning to come to grips with my addiction to anger.

Twice in my life, I’ve found myself reading her books.

I first read Wasted back in the early-2000’s, possibly while still in high school. I went through a morbid stage, where I read a lot of real-life stories of those battling eating disorders. Her book was one of many, and I remember enjoying her writing style.

When I started searching for books to read for this month, books relating to a higher power, I wanted to go a non-traditional route. I tried to find a book told from a nonbeliever’s perspective. But not your typical atheist text, one filled with anger towards a particular higher power. I wanted one that examined if you could be spiritual without a higher power.

Marya’s book, Waiting, came back as a top result, and since I recognized her from Wasted, I decided to give it a go. I did not read a summary, nor did I research beyond the title, subtitle, and author. I placed it on hold from my local library and waited. It was a shock when I started reading it and realized I was not the target audience, again. Marya’s book is for people in the process of recovery who do not believe in a higher power*. But given how some popular recovery program’s require a higher power to work through the steps, there can be anxiety surrounding a lack of belief. Marya’s book fills that gap and provides comfort and assurance that a person can complete a program without belief.

Granted, it was my fault for not researching the book. I judged a book solely by its cover and as a result, found that it might not be for me.

But the book was for me. I may not be in recovery for substance abuse, I am in recovery for some equally destructive behaviors. Marya had plenty to say that applied in my own life, primarily as I work through the process of self-acceptance, and stepping outside of my addiction to anger.

So it ended up being a beautiful accident to read Waiting for this month’s book review. 

What follows is my review of a book I chose on my own. I did not receive any compensation for this review.

Book Information

Title: Waiting: A Nonbeliever’s Higher Power
Author: Marya Hornbacher
Date Published: 2011
Publisher: Hazeldon
Pages: 137
Genre: Spirituality/Recovery

Goodreads Link
Amazon Link (non-affiliate)
Official Book Website (non-affiliate)


Read More

a-higher-power-to-help-manage-a-chronic-illness

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.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Canva


positive-chronic-illness-blogs

Positive Chronic Illness Blogs

As we get towards the end of summer, and the end of a month focusing on positivity, I wanted to share some of my favorite chronic illness blogs out there, especially ones that focus on staying positive while managing their illness. Life with a chronic illness is difficult, but it’s nice to read others who have a similar approach to the disease: engage with the positive.

Please take a moment to read through these blogs and give them a follow if you haven’t done so already.

Multiple Sclerosis Blogs

  • Fight MS Daily: Alyssa chronicles her ups and downs as she manages her MS, but she always has a positive spin to offer her readers
  • Dinosaurs, Donkeys, & MS: I love following the adventures of Heather and her “donkey” dizzy as they journey through life with MS. Through Dizzy do we get a positive perspective of living with MS.
  • Tripping Through Treacle: The name alone promotes positivity, as treacle is sweetness in the UK. Jen works to educate people on life with MS from a positive and honest perspective.

Chronic Illness Blogs

  • Invisibly Me: Caz pours everything into this fantastic blog about life with an invisible, chronic illness. You’ve seen her comment frequently here, always something sweet and positive to add to the conversation.
  • Crafts, Chronic Illness, & Adulting: Coping with Chronic Fatigue Syndrome, CC&A seeks to educate readers on life with an invisible illness and fatigue. She also shares her artwork and crafts. What drew me to her blog is her humor and approach to life.
  • Life with an Illness: Mackenzie also chooses to approach her chronic illnesses (which include Lupus, Celiacs, and Fibromyalgia) with positivity and never giving up as much as possible.

Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Canva