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.


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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.


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Reaching Out to Others

I struggle to ask for help. Ash will tell you that he has to drag it out of me when he knows I am struggling. I will get frustrated in those moments and give into his offers for help. Here’s how bad I am: when I was pregnant with Jai, I refused to ask for help even when I needed it. I had something to prove, mainly to myself, that I wasn’t helpless. While being independent isn’t a bad thing, learning to be okay with reaching out to others is equally important.

It’s humbling when I admit I need help. It feels like a weakness when I do. I am not imagining it either, American culture does not encourage asking for help. With the reemergence of the “bootstrap” narrative, it can lead us to feel awkward when we want to ask for help. Individually, Americans are happy to help those around them. But looking on a broader scale, Americans tend to prop up those who find success with minimal help.

This can lead to the rest of us feeling judged anytime we need to get help.

It would be nice to do everything on our own, but with a chronic illness, that’s often impossible.

Chronic Illness & Asking for Help

Having a chronic illness means we will need to ask for help at some point. It may be from family, friends, or healthcare providers. When we ask for help, we are performing an act of self-care.

But getting to the point where we can ask for help is the trick. Often, we’re dealing with an invisible illness. When we reach out for help, and we know we don’t look/act sick, it can feel like we’re being unreasonable. For myself, I feel like I am taking advantage.

If I need help from anyone, I will bumble out justifications why I need the help. I often feel like others won’t understand, or I need to remind them that I have a chronic illness. At times, I feel like I manage my MS so well, that others forget I even have it. So when I need help, I am coming from a place of “they will think I am taking advantage of them,” or “they will think I don’t really need the help.”

I recognize that I am being unfair to others when I take this attitude. I am not trusting that they will understand or that they don’t remember. People remember I have MS when I tell them. It also comes from a space of not believing others when they say, “let me help you.”

Learning to be “Okay” with Help

It is okay to ask for help. For the most part, you know what you are capable of doing. So when there comes a time where you need to reach out to others, do it.

But if you ask for help, show appreciation for whatever help you receive. I have helped others, and sometimes I receive an insult in place of gratitude. You may find it’s a similar situation when you ask for help: you feel vulnerable, and when you do, you may be slow to express your gratitude. But you want to preserve your friendship and be able to ask those people for help again.

Be sure to express your appreciation. Be okay with asking for help. Work on releasing any feelings of vulnerability and look at getting help as a sign of your inner strength.

You Are Not Alone

Coping with a chronic illness is a lonely affair. Your symptoms, your struggles, your victories, they are all internal fights for the most part. These battles become hidden from the outside world. It makes dealing with a chronic illness one of the loneliest journeys you’ll make in your life.

But you are not alone.

There are support groups out there relating to your illness, online and in-person. If you are uncomfortable with the support group dynamic, you can always read blogs and lurk in forums. You can find connections out there and similar stories/struggles to your situation.

The more you reach into these safe spaces for your illness, the more comfortable you should become in recognizing that there is normalcy with your disease. When you normalize your experience, it should be easier to reach out to others to help you. You see that getting help is part of the disease and there’s no shame in doing that.

Help Others Help You

In September, I reflected on the need some people have to help you cope with your illness. You can always say “no” to their help, but sometimes they are insistent, and you do need them.

To be clear, you are under no obligation to allow people to help you if you don’t want it. But sometimes it is easier to give in to the insistence and let them help.

In these scenarios, have a pre-set list of things you are willing to receive help on. It may be driving you to appointments, meeting for social interactions over coffee/tea, or dropping a pre-made meal off. By having an “okay” list to draw from, you won’t compromise your values, and you won’t be left struggling to find something for your friend to do.

It’s hard to accept help from others, but we cannot pretend we are an island. Sometimes it’s essential to reach out to others and let them help us cope with our chronic illness.


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surrendering-control

Surrendering Control

As a child, I heard about the importance of surrendering control, especially how it pertained to a higher power. While I spoke a bit on Monday about the importance of giving up control, this post is for those of us who cannot stand the idea of giving up control. When I heard the words “surrender control” growing up, I found that I would internally shudder at the thought. The word “surrender” in this particular context still irritates me years later.

I still haven’t quite identified why I hated the thought of surrendering control, even as a child. I suspect it has something to do with the abject vulnerability that comes from giving up control. I saw that the moments I was most vulnerable, I was also treated as though I was weak. So any display of vulnerability was a display of weakness. Surrendering was the ultimate sign of weakness.

Additionally, growing up, you are beginning to assert your independence. Being told to give up control, just as you are starting to come into control of your own life, feels like so many steps backward. I learned to associate giving up control as infantilizing. I could not differentiate between the “positive” forms of giving up control like going with the flow, and the “negative,” which was micromanaging all aspects of my life.

And so I became a control freak.

How to Give Up Control when You Can’t

It’s all well and good to be told to give up control. It’s one of those “easier said than done” situations.

But when it comes time actually to try and give up control, it can be difficult. I think for those of us who need to be in control are keenly aware of how out of control the world is, so we cling to whatever means to maintain a sense of order. We find areas in our lives we can manage, and even if we manage it poorly, there is some stability in the belief we are in control. 

Humans are masters of deception. Especially self-deception.

So, how do you surrender control?

Not easily, and I wish I were joking about that. This would be one of those areas where, if we could snap our fingers and fix everything, we would do it. I thought if I reflected on it hard enough, it would happen.

But it doesn’t work that way. Giving up control isn’t just a thought-based exercise. It requires active participation. I was seeking for something else to take control from me, even though it wasn’t for it to take, nor was I willing actually to give it. I couldn’t expect anyone, or thing, to take control. 

I, and I alone, could give up the control in my life. But I am like an addict, and to be sure, control is addictive, and addicts struggle to give up their drug of choice. While micromanaging my life brought on only stress, frustration, and health problems, I was unwilling to give up my “drug.”

Once I realized that I was responsible for my own burden, that the only way I would regain control in my life is to let it go, was I able to make a choice needed in the situation.

Now, if you have a higher power, you might say this: my teachings tell me to give up control. Many allegories teach to give to your higher power. Yes, but make sure you are actively giving up control and not expecting your higher power to take control from you. This is the trap I fell into. Make them your focal point, but remember that only you can say “I am going to give up control in this area of my life.”

Often, meditating or praying to that higher power or the universe can give you the strength you need to do so, so keep that in mind as well.

But it really has to be your decision to let go. Acknowledge that you are not in complete control of your life, that you are going to go with the flow, and accept whatever life hands you as graciously as possible.

Clear Head; Healthy Decisions

Control freaks: do you find that your head gets so cluttered with all that you have to do? All that you have to remember? All that you didn’t do, and now you feel frustrated?

The advantage of surrendering control is that it gives you a clearer head. No longer do you have to think about all the parts of your life you need to manage. You get a chance to prioritize what you can control and what you can’t. It allows you to reflect on your life more objectively.

Remember when I talked about not having expectations and accepting everything? No longer do you place expectations on your higher power or life to take control from you (you’ve given it over freely), and therefore, you can accept anything that comes your way. Often we get so wrapped up in controlling everything that we miss out. We might miss an answer we were waiting for, or an opportunity we’ve been wanting because it does not fit into the framework we’ve set up for ourselves.

We can make healthier decisions when we are in an objective head space. We can see what we need when we need it, and why we need it when we aren’t so focused on the minutiae.

Deeper Connections

Seeking a deeper spiritual connection with your higher power, the universe, or life? I found that once I gave up control in my life, truly gave it up, I had a deeper spiritual connection to those around me and the world at large.

I used to get so focused on the minutiae, but each time I slowed down, took the time to relax and go with the flow, I felt more at ease with myself and my placement in the world.

I also find that my compassion deepens for others and myself. My resiliency increases, and I am more accepting of what happens to me and around me. I am more willing to stand up for myself where I never could before, and be selfish in healthy ways.

Once I gave up control, I felt freer and in control, rather than out of control like I assumed I would feel.

Taking the Right Amount of Responsibility

Just as a reminder, when you give up control, you are still responsible for what happens in your life. You might be waiting for an answer, so what happens between asking the question and receiving that answer is your responsibility. We sometimes use giving up control as an excuse to sit around and be inactive. Instead, we should continue to be proactive in our lives. Seek other answers while waiting for a specific one.

Sometimes we don’t get an answer, or it’s not the one we want, and that’s okay. Consider the timing wrong, and ask again later. Look at it as a roadblock, and find a way to adapt around it.

Whatever you do, when you surrender control, view it as a chance to be more free and active in your life.


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Positive Thinking Leads to Positive Actions

Since the 1952 publication of Norman Vincent Peale’s book The Power of Positive Thinking, there’s been a market for promoting positive thinking in the self-help circuit. It does make sense, and science backs it up: when we focus on engaging with our positive thoughts, we are less stressed and improve our health. The more we engage with positive thinking, the more it leads to positive actions in our lives.

We are marketed positive thinking as a way to increase our overall happiness in life. The issue is that happiness gets conflated with satisfaction. What we are truly seeking is total satisfaction with our lives, whereas happiness becomes a byproduct from that satisfaction. We can achieve joy, and therefore, happiness when we begin to shift our mindset from mostly negative to mostly positive.

To begin this process, we must self-reflect and be open to rewiring our brain to be receptive to positive experiences and thoughts.

Positive Thinking = Healthy Mindset

So positive thinking, what is that anyway?

The theory is this: if we start to incorporate more positive thoughts in our daily lives, we engage in a healthier mindset. Once we have a healthier mindset, we engage in more positive behaviors.

Anecdotally: when I started viewing myself with a positive perspective, I found I was open to doing positive things for myself. I have a hard time accepting myself as a decent person, but once I stopped thinking of myself as a bad person, I was more willing to eat healthier. I started to make healthier decisions regarding exercise. I decreased my desire for self-destructive behaviors. The idea of making healthy decisions became palatable because I finally felt like I was worthy of the effort.

It all stemmed from the moment I chose to engage with positive thinking.

Healthy Mindset Leads to Healthy Actions

The science is there: when a person develops a positive mindset, they are more inclined to engage in healthy behavior. You are more prone to go to the doctor to treat an exacerbation of an ailment you might have ignored. You re-prioritize your thoughts, choosing not to get distracted by things out of your control. You may even decide to reconfigure who you spend your time with, opting to be with people who leave you feeling good about yourself, rather than those who are toxic.

To be clear, this isn’t saying we take on a Pollyanna perspective and only view the good out there. We still acknowledge the negative and yet get caught in the negative thought cycle, but we spend less time in the negativity.

For those of us who spent a lot of time in the negativity, incorporating more positive thoughts is not a 180-degree turn, but a chance to be more centered in our thoughts. Be realistic, but also choose to be more positive in our realism.

Engaging with Positivity More

Find ways to think of yourself in a positive light. Celebrate your life as much as possible. Did you let someone in front of you in line today? How did that make you feel when you brightened their day, even for a moment? Engage in those good feelings you get when you do something positive.

Often we look to others to be our cheerleaders, our parents, friends, coworkers, and sometimes strangers. But the biggest cheerleader in our lives has to be ourselves. External validation is nice to have, but its the internal validation that’s more important. If you let that person in front of you in line and they didn’t acknowledge it, that’s okay. You didn’t do it for their validation or gratitude. You did it for yourself. If you feel good about doing it, who cares how others react?

Praise yourself for the moments you did something that makes you feel good. Don’t look around for others to do it. Engage with your positive thinking and positive actions as often as possible.

It will be gradual, but you’ll find that after some time, your actions will begin to reflect your positive thinking. Your feeling of self-satisfaction and its byproduct of happiness will increase as well.


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