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

power-of-prayer-in-chronic-illness

The Power of Others

When dealing with a chronic illness, it is sometimes our deepest desire to enlist the help of others. We might be too afraid to ask on the surface, but unconsciously we desire connection to others, especially when we feel alone. Often people want to help us, but can’t or don’t know how best to do so. Sometimes the best thing they can do is pray or send positive thoughts our way.

Is the concept of “thoughts and prayers” actually helpful? Or is it something we say to each other, and accept on our behalf as low-effort?

I think it boils down to your perspective. If you are a glass-half-full person, then having someone pray or reflect on you is helpful. If you are a glass-half-empty person, then it might be a hollow offer.

How can others help you through your health crisis? If you are new to my blog, please review this month’s disclaimer before reading any further.

The Power of Prayer (or Positive Thoughts)

As a teenager, I remember sitting and listening to my religious leader “cite” a study on the effect of prayer for those in crisis. I use quotes not to disparage, but because the leader was extremely vague about the study, the details, and did not provide resources to find the study on our own.

Reflecting back, I believe they were referring to Dr. Randolph C. Byrd’s 1988 study, “Positive therapeutic effects of intercessory prayer in a coronary care unit population.” The study found that participants who received intercessory prayer fared better in their follow-up appointments than those in the control group, who received no prayer at all.

Unfortunately, subsequent studies found that Dr. Byrd’s 1988 study to be at best flawed, and at worse irresponsible. Relying on prayer, regardless of the religion, to heal a patient can prevent the patient from receiving the necessary medical intervention needed to help with the illness. Each study that comes out relating to prayer and health finds little correlation between prayer and improvement of health.

Here comes the “but…”

While prayer itself may not change the outcome of a medical diagnosis, there is something behind knowing that others are thinking about you. It may not improve your health, but do you feel comfort when you know others tell you they are thinking/praying about you?

Unfortunately, I ran into a bunch of dead-ends in my research for this post surrounding the benefits of having others think about you. Current trends are to not worrying about what others think, and focusing solely on self-care. Both of these are positive in its own right, but it doesn’t answer the question: what are the benefits knowing others are thinking about us?

What I am about to say is speculative and unscientific: I believe knowing others think about you, whether it’s via prayers or positive thoughts, provides comfort. It allows those of us with a chronic illness to know we aren’t alone. Others may not know our experience, we may be alone (mentally) in our disease, but when others care for us to spend a few moments out of their day to reflect on our journey, it means a lot.

Going Beyond “Thoughts and Prayers”

If you are reading this as a friend or family member of someone with a chronic illness, there are some things you can do to stretch out your “thoughts and prayers” for them.

Use the time you reflect on them and find ways you can help. Sometimes, when we say we’re thinking about someone, it’s the most we can do. That’s fine, but consider doing something in their honor.

What You Can Do to Help

  1. If the person is dealing with a massive health crisis, consider getting yourself screened. For example, if they have cancer, try to get tested for that particular form of cancer. Or, get yourself screened as a potential donor for them or in general.
  2. Learn all you can about their health crisis and be better prepared for how to engage with the patient. In your research, find out what other patients say about the “dos and don’ts” in conversations.
  3. Donate money in the person’s honor towards research for their illness.
  4. Share across social media the latest information and research on the illness, but make sure to get their consent before tagging them.
  5. If you can physically help the person, take them to appointments or for a social outing of their choosing.

There are many other ways you can help someone with a chronic illness to extend the efficacy of thinking about them. You just have to find what works best for you and them.

Powerlessness and Control

Often, those in our lives feel powerless when we get a chronic illness diagnosis. They stand beside us, hold our hand, and do everything to help us manage our illness and still feel like they can do more.

Prayer or reflecting on us is an additional way to feel like they are helping. It’s calling on a higher power or the universe to intercede on our behalf. While the answer may never come, or be positive, it’s yet another way for our friends and family to feel in control in an out of control situation.

Sometimes saying “I will pray/keep you in my thoughts,” is enough to empower the person to go beyond the statement and spring into action.

When faced with powerlessness, the smallest action can help someone regain a sense of control. Next time someone says, “I am thinking about you,” think not of it as a common thing we say when there’s nothing to say, but rather a way of providing comfort at the moment.


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


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


focusing-on-the-positive

Focusing on the Positive

I struggle with the idea of focusing on my positive qualities. It became so ingrained that I am a bad person, that the idea of having positive qualities can be physically painful at times. When asked by others to name something I appreciated about myself, I often balked at the exercise, trying to find the most superficial, least offensive thing I could name: my laugh?

In an awkward couple of seconds between the question and my response, I often have a tightness in my chest coupled with intense shame for seriously considering the idea that there is something good about me. I struggle to take a compliment, and I am known to self-sabotage an opportunity if I know I will succeed.

When I recognized the unhealthy relationship I had with my positive qualities, I realized I needed to not only examine it further, but I wanted to learn to celebrate the stuff I loved about myself. If I were to heal my painful internal narrative, I would need to start countering it with some facts about myself: I am a decent person, and it isn’t arrogance to say that.

For the rest of this month, I will be discussing the importance of highlighting our positive qualities, illness included, as a way to develop a healthier relationship with ourselves.

Learning to Fall in Love

You may already love yourself, and that’s a wonderful thing. No one is more deserving of your love than yourself. This month will hopefully serve as a refresher course of why you fell in love with yourself in the first place.

But if you are like me, you need to find a way to fall in love with yourself. You may be searching to do this right now, which is why you landed here, or you haven’t realized that it’s a necessary step in the self-improvement journey.

While this next step should be fun, it may be painful for you as it is for me.

That pain is part of the process of developing any new relationship. When you try to fall in love with yourself, you are fostering a relationship just as you would with a potential lover or friend. There will be awkward moments where you’ll wonder if you messed up; where you are uncertain if the other person will even like you back; or where you’ll discover something new that mildly annoys you. The comfort is that the other person in this relationship is you and they literally are not going anywhere.

So this is an opportunity to freely explore yourself, one where you can remove judgment because in the process of getting to know yourself better, there is no right or wrong way.

To get you started, take a few minutes to figure out what you are comfortable admitting you like about yourself.

Listing off our Positive Qualities

If you follow the weekly newsletter, you may have done this exercise already: list off five things you deem positive about yourself. For now, keep the list to what you are comfortable admitting to yourself.

This list can be as superficial as loving how you sneeze, or as deep as your ability to be a quality baker/cook. Make a list quickly, without overthinking it, as this will allow you to unconsciously list what is important. Sometimes when we don’t overthink something, we allow ourselves a glimpse into our deepest truths.

I find when I do these sorts of exercises, and I overthink it, I will backtrack and put down the “right” answer, thus skewing the intended outcome. When we are learning to fall in love with ourselves, we have to do the number one thing all relationship experts agree on in a two-person relationship: being honest.

Since I am also on this journey of learning to fall in love and developing a healthier relationship with myself, here are five things I came up with in my exercise:

  1. My personal drive and motivation to accomplish goals
  2. My laugh and how it can be infectious for others
  3. My cooking/baking abilities and adaptability in the kitchen
  4. My sense of humor
  5. The love that I have for others

The Struggle to Love

You may find, like me, that making these lists are the start of that uncomfortable feeling we get. Admittedly, these lists are a tad silly, but they serve a purpose. To physically manifest our positive qualities. Sometimes we have these ideas about ourselves that float around our head, but when we take the time to write the idea out on paper, we make the idea “real.”

I feel foolish admitting to these five things, even now, because of the embarrassment I feel about myself. If I allow this embarrassment to control my thoughts and actions, I won’t allow myself to feel something for myself. I will remain afraid to take steps to fall in love.

Like approaching a crush, we might talk ourselves out of an opportunity to put ourselves out there because we fear rejection. Our negative self-talk will try to reject us, but we must persevere. We want to love ourselves despite what our negative narrative tells us.

These steps, like any relationship, will come slowly. Overcome the initial embarrassment in favor of reaching out for connection. Take it slowly and see where your unconscious takes you as you grow more comfortable with the idea of loving yourself.

Celebrate Ourselves

As we hurtle through July, take some time to celebrate yourself any opportunity you get. Achieve a small goal? Celebrate by allowing yourself some kind words of encouragement. Overcame an obstacle? Allow yourself a pat on the back. Find ways to treat yourself in a healthy manner.

Be open to any and all opportunities that come your way to celebrate you.


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