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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Turning It Over

I struggle with letting go of control. Ash will tell you this should you ask him. When I get into a micro-managing state, it’s one of the quickest ways for me to experience an exacerbation. When I feel out of control, I tighten my grip to control everything around me, and then I stress out because I feel out of control. While I haven’t had a significant exacerbation in several years, my brain fog, L’Hermittes Sign, and neck twinges when I start down the path of stressing out. 

I’ve learned I have had to say to myself, “I can’t control everything, so I need to stop,” and attempt to go with the flow no matter what direction that might take. But I can slip back into bad habits of wanting to control everything and then I start stressing out again.

It’s a vicious cycle.

And usually feeling out of control helps bring that about. I’ve learned that I cannot control everything, and for the most part I do well to go with the flow of everything, but then I slip back into bad habits of wanting to control everything around me and then I get back into that space of feeling out of control and stressed.

It’s a vicious cycle.

When we have a particular life philosophy, we are often told to let go and give up control. And there’s something to that – it’s just got to be done in a healthy and reasonable manner. I have found what works for me, and so it’s important that you find what works for you.

I’ve learned I have had to say to myself, “I can’t control everything, so I need to stop,” and attempt to go with the flow no matter what direction that might take. But I can slip back into bad habits of wanting to control everything, and then I start stressing out again.

Depending on your life philosophy, or belief system, we are often told the importance of giving up control. That may be to a higher power, the universe, or just in general. That’s solid advice no matter your background: recognizing what you can control, what you can’t, and letting go of what you can’t.

When we have a particular life philosophy, we are often told to let go and give up control. And there’s something to that – it’s just got to be done in a healthy and reasonable manner. I have found what works for me, and so it’s important that you find what works for you.

Letting Go of Our Worries

If you have a higher power, you are at an advantage to someone who does not, because many belief systems teach the importance of giving up control to a higher power. If you don’t have a particular belief system, you have to remind yourself not to be so controlling and go with the flow. It’s a built-in reminder that those without a higher power do not have. But if you don’t have a higher power, that’s fine, you just have to remember to say, “it’s okay, I don’t need to control everything.”

Struggle with giving up control? Well, if you have a belief system, seek out direct texts that teach you to give up control. If you can’t find anything there that speaks to you, seek out secondary books, usually written by scholars, that might speak to the matter.

If you don’t have a belief system, consider mindfulness techniques to bring you back to the present moment. When you focus on the present, the moment you are in now, you cannot try to control everything around you. Center yourself at the moment and find ways to let go of the control you are fighting to hold. Look to your health as a starting point: I must let go of control to better tend to my health.

Finding the Balance

This brings up the question: who is responsible for our lives? Us? Our Higher Power? The Universe? Something else?

That’s an answer only you can decide. I cannot tell you, nor can I presume to suggest the correct answer. What I can do is tell you what worked for me, but that does not mean it will work for you.

For myself, I gave up personal responsibility when I had a specific higher power. I gave that higher power responsibility for my life, my happiness, and at times, my actions. I gave up too much control to this higher power. They were not responsible for my specific actions or responses to a situation, though I said they were as a means of absolving bad behaviors.

When I took responsibility for my actions and reactions to situations, I found a more profound peace within myself because I was able to feel more in control of my life. Even though things happened to me, outside of my control, I recognized that my response to those things was something I could control. It was about finding a balance between what I could control and what I could give up.

Figure out the balance in your own life: what responsibility can you take on for yourself, and what control you can let go. When you recognize that there are elements in life beyond your control, such as your chronic illness, you can start to lower your stress.

Acceptance of What We Cannot Change

Another advantage people with a higher power have over those who do not have one, is it allows for recognition for what cannot be changed and force us to move forward. Without a higher power, there needs to be a reminder to move forward in life, despite the roadblocks. People can place their trust in the higher power to see them through and take comfort in that.

Without a higher power, we must seek comfort elsewhere. We must trust that life will guide us through the process and that a coincidence will pop up to allow us to move forward or find an alternative. Often, life provides us with this when we aren’t expecting it. So remember to expect nothing, but accept everything to embrace an opportunity when it arises.

Moving Forward

It’s not easy to give up control, whether to a higher power or just in general. It’s never going to be easy, no matter how often we might need to do it. Why? Because control allows us to feel empowered. When we give up control, we lose a sense of power.

But if we want to move forward in life, if we’re going to begin to heal the emotional wounds caused by a chronic illness, we must give up control over things we cannot control. Whether that is to your higher power or to something else, when you give up control, you begin the process to move forward in life.

Life moves us in a forward momentum whether we like it or not, we might as well accept that movement and find ways to work with it, rather than against it.


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Featured photo credit: Canva


learning-to-trust-yourself

Learning to Trust Yourself

We’re always told that trust is earned. People must earn our trust if they are going to become friends or lovers, and trust must be regained if broken. Sometimes we lose trust in ourselves, and in our abilities. Or maybe we never learned to trust ourselves at all. I realized that the moment I stopped trusting myself was the moment I allowed self-doubt, insecurity, and anger take over my life. I had to learn how to trust myself again.

Lack of self-trust hinders our abilities to do essential tasks. Second-guessing, negative internal self-talk, and desire to avoid all interfere with our lives. When we don’t trust ourselves, it can stall our plans.

Self-Doubt Prohibits Trust

As children, we were taught to trust in our abilities by our guardians. I am doing this daily for Jai: when he encounters a particular obstacle that he does not believe he can overcome, I reassure and coach him through the steps to overcome it. Because I can see the bigger picture, I know what he can do without me and when I should step in. By granting him the opportunity to learn to trust himself in these moments, he’ll have a better awareness of his abilities.

Life slowly ebbs away the self-trust you built in childhood.

You take one too many blows to your ego; you deal with bullies at home, school, or work; you feel like you fail more often than you succeed. If you have a chronic illness, it might temporarily take physical or mental abilities, which is demoralizing. You reach a self-trust breaking point.

When this happens, we inhabit spaces of the doubt more often than areas of self-trust. It prevents us from taking the necessary steps to get better.

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listening-to-my-self-doubt

Listening to our Self-Doubt

How often have you listened to your self-doubt? Listened to the point that it affects a decision you want to make?

You may not even know you are allowing your self-doubt to affect your decisions. It’s okay. We’ve often done things without realizing the where’s and why’s. But next time you want to make an important decision, and you feel yourself freezing, ask yourself: is this coming from a place of self-doubt?

Listen to the voice that pipes up. What is the tone of the internal conversation? Do you hear encouragement or discouragement? Is the rationale reasonable, or is it unfairly assessing your capabilities?

What Does it Mean?

Self-doubt is the belief we are incapable of doing something. We might compare ourself to others, be obsessively goal-oriented, or feel like an impostor. The end result is feeling like we aren’t able to do something, so why bother trying?

There may be an appearance of logic to our reasoning, i.e., why should we attempt something new that might be dangerous if we’ve never done it before? But that itself is dangerous thinking. It keeps us within our comfort zones and does not allow for growth of any kind.

We have to look at why our self-doubt wants to keep us within an unhealthy dynamic and what it’s trying to tell us.

Often, self-doubt follows moments of deep self-reflection because we are now acutely aware of our limitations. I find that I get frustrated by my anxiety after some self-reflection, which heightens my anxiety and can cause me to freeze. Self-doubt is the voice I hear that encourages me to engage in the unhealthy behavior of staying frozen.

What helps me is figuring out the root of my self-doubt.

Origin of Doubt

Like many of our internal beliefs and behaviors, doubt comes from childhood. It may come from grownups in our lives teaching us to doubt ourselves, or it may come from our experiences. Think back when you did something dangerous on the playground. You may have really hurt yourself to the point of never wanting to take the same risk again. Now you have an aversion towards tasks and opportunities that remind you of the incident.

The self-doubt does not come from a bad place as much as it comes from a place of personal protection. You may want to protect your ego, body, or relationships because you are worried about the pain.

We may no longer be running from other apex predators, but humans still (for the most part) try to avoid painful experiences emotionally and physically. We find ways to protect ourselves from feeling that pain. We may blame others for our own failings, project our deepest thoughts onto others, and we engage in our self-doubt to not even attempt to make changes or do something new.

But it’s about pushing through that pain, embracing it, getting back on that horse and not worrying about the consequences.

But let’s take a moment and talk about those…

The Consequences

When we give into our self-doubt and say “it’s not worth making a lifestyle change;” or “I don’t do diets because they never work;” or “why try finding a way to adapt to my chronic illness, I am never going to be cured;” we accept the severe consequences. Sorry to be melodramatic about it, but the consequences are what keeps us in an unhealthy mindset, body, and approach to our chronic illness.

When we give into our self-doubt, we say it’s okay to be unhealthy.

There are moments, to be sure, when we engage in self-doubt and those are okay provided we find a way to move beyond them. I am talking about refusing to make any changes when you recognize the problem.

A moment of self-doubt that I am still working through is written communication. I love writing my blog posts, but when it comes time to write and email or text message, I freeze. It comes from a place of fear, mostly of the other party expressing frustration or anger at my delay in responding.

So I don’t send the communication. I don’t even write it most times. Which gets me more anxious over how much time has passed…it becomes a vicious cycle.

This unhealthy way of thinking and behaving causes me to lose out on meaningful connections and opportunities because I am so caught up in my self-doubt. It took me years to get healthy because I doubted I could.

You may find yourself in a similar space where your self-doubt stops you. There may be something you really want to do, but because of your chronic illness you don’t want to try because you don’t think you can.

I am here to tell you that you can. You can always try and do something. It may not look exactly the way you want because you don’t have the means to match your mind’s eye, but you can always make an attempt.

At this moment, the only person stopping you from figuring out how you can do it is yourself.


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Self-Reflection & Personal Wellness

As discussed in Monday’s post, self-reflection is extremely important for the success of a personal wellness journey. It allows you to be honest with yourself and finding a way to achieve your goals. Today, we’ll focus more on the personal wellness aspect.

If you want to take anything away from today’s post, the key is to be honest with yourself and figure out who you are. What you want in life will follow as will most things.

Self-Reflection & Personal Wellness

Any goals that you set for yourself need to go through a level of introspection. Are these goals reasonable? Can I actually achieve them? What do I need to motivate myself? Will my chronic illness affect any changes I want to make in my life?

Let’s speak to the elephant in the room. Self-reflection does take us down a negative path, but it is necessary. We will confront negative thoughts and feelings about ourselves, and this will make us feel uncomfortable. When I decided to take better care of myself, I recognized in a moment of self-reflection that I would have to address the lifelong negative thoughts and emotions I dealt with daily.

To best address these aspects, I experienced several days of feeling emotionally uncomfortable until I settled on a healthful solution to deal with my thoughts and emotions. During this period, I may remove myself from specific social scenarios that would perpetuate what I wanted to fix or place mental boundaries to protect myself until I was ready.

Once I arrived at a solution after this self-reflection exercise, I always felt better about myself and my personal goals. My motivation shoots up and I act in a way that I am proud of myself. In the process of self-reflection, I get one step closer to my wellness goals and I learn more about who I really am.

The temporary moments of discomfort that comes from self-reflection are worth the life lesson you get learn about yourself.

Be Honest with Yourself

When setting goals, always be honest with yourself.

If you want to quit smoking, is your time-frame reasonable? You may be someone who needs to slowly cut back on your daily habit versus going cold turkey.

The only way to know that is to take the time to reflect and be honest with yourself. Have you found success in cold turkey? Or did you do better when you cut back one cigarette at a time?

No matter what your goal, self-reflection will give you the opportunity to understand yourself and how you differ from others. Because no two people are alike, your personal expectations must match that. You cannot expect your wellness goals to be complete in the same amount of time as a friend. You may be faster or you may be slower.

Looking towards your past behaviors, actions, and thoughts can clue you into what your wellness journey will look like. If you failed many times in the past, so this thought is discouraging, do not despair: look instead at those attempts as learning opportunitites. What didn’t work each time? What did?

This should sound familiar because self-reflection leads to be more self-compassionate with yourself.

This is the key takeaway each time you self-reflect: who are you and what are your personal needs? If you are honest in your reflection you will find more success in your life goals.

But Who Are You?

There is a temptation to reflect on who you want to be or your idealized self, but not be realistic about who you are now. This is where we run into problems with succeeding in our improvement journey.

I know I am rarely honest with myself when I have to track calories for weight loss. I cut corners and say I ate less than what I actually did and I might inflate my exercise times. Then I wonder why I haven’t lost weight. It’s because I wasn’t honest with myself or my goals.

I was focusing more on my idealized self, not my current self wanting to lose weight. I thought I was doing better than I was and used it as an opportunity to justify cheating on my regimen.

It’s key to be brutely honest with who you are right now. That may be a person with a weakness for cigarettes when stressed, needing the occasional sugar rush to boost energy, or quick to confront people when your anxiety levels are up. Deep down, you probably already know this about yourself, but were too afraid to reflect on it.

The discomfort you feel as you work through your personal honesty is temporary. You will make it to the other side of each exercise and you will find personal success in that honesty.

Those First Steps

The first steps are hard, but here are some places to get started (with or without a chronic illness):

  • Take a step back and look at your life as though you were a stranger (not even a friend). You want to have that “out of body experience” reflecting on your life. Who do you see?
  • Compare who you think you are versus the person you see when looking at yourself objectively. Where do you match and where do you differ? In that gap between the “two” people might contain a clue on becoming your ideal self.
  • What are some of the first thoughts you have about yourself? Are they positive or negative? What do you want your first thoughts to be?
  • Figure out how to make your idealized self match your actual self. If you have a chronic illness, be realistic about your idealized self. You waste precious emotional resources if you focus on a person you can never become due to your chronic illness. How close to your idealized personal goals can you get if you pushed your limits?

This is only the beginning for what we will do this month. In Friday’s newsletter, we focus on the importance of self-reflection with a chronic illness. If you have MS or another chronic illness, be sure to sign-up for the newsletter so you can get tips, tricks and jump into our wellness journey. By doing so, you won’t miss Friday’s post.


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Featured photo credit: Nicollazzi Xiong from Pexels