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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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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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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coping-with-a-setback

Coping with a Setback

It’s tough to cope with a setback. Setbacks stink, and they, well, set us back. How often have you started with a specific goal in mind only to find that something gets in the way of completing it? It might be a person dragging their feet on a project, a health obstacle, or poor timing, so it doesn’t work out.

Every Sunday, I set a small goal for myself for the week: complete my chores each day promptly so I might spend more time with Jai. I might start off strong, get ahead by two days on Monday only to have something happen Tuesday and Wednesday to get me rushing to finish my chores if they get finished at all. As the week marches on, I get farther and farther behind on my tasks until its Sunday again.

It never seems to fail that each time I get two steps ahead, something sets me four steps behind.

It’s frustrating when this happens. Every time I set a goal for myself, with or without expectation, something gets in the way. The trouble is, it isn’t every time that this happens. It only seems like it due to negative bias. But often it’s enough to leave me to feel discouraged that I am getting nowhere near achieving my personal goals.

The Source of Setbacks

When I recognize that I am slipping down a discouraging path with a setback, I try to reach a space where I can understand what is happening. Some delays are out of my control: the car needs an oil change, and thirty minutes last two hours because the car is due for a maintenance check. In this scenario, I have a choice to make: deal with the issue at hand, and get the car checked out, or skip-it and allow a possible issue fester into an expensive problem.

I choose the setback because I know not dealing with the critical task at hand, maintaining the health of my vehicle, can cause more stress in the future. Yet, time was lost that I planned to devote to something else, and that feels frustrating.

Another source of the setback may be of my own making, typically through self-sabotage. I am aware enough to know that I am the source of it, yet sometimes I continue to engage in the self-destructive setback. This may be dropping the ball on a project, not responding to essential communications, or participating in toxic behavior to avoid dealing with the situation.

When I get a setback that is out of my control, I get more frustrated. When I create my own impediments, I have only myself to blame. I can choose to change my behavior to have a favorable outcome. But when the setback is external, I get more discouraged because I don’t know how to fix it. It’s out of control, which makes me feel out of control.

But I am learning how to better deal with it.

Self-Compassion and Gratitude

When I feel out of control, especially amid a setback, I have to find a healthy way to control the situation. There is only one thing I can control, and that is my reaction to the setback. Through this, I can manage the next couple of steps I take. This is my response, how I deal with my response and deciding what my options are.

Depending on the scenario, a setback might feel like a permanent roadblock, but it does not have to be. I have options for finding a way around it. If I react like I’ve hit a dead-end, I won’t try to find an alternative. If I respond like I can turn around and try a different path, I am more apt to consider my options.

And sometimes a shut door is a shut door. There is wisdom in knowing that there are no other options over assuming there are no alternatives.

To healthily manage my reaction to a setback, I engage in self-compassion and gratitude for the situation. I tell myself, “it’s okay that this might not be your ideal situation, but you will do the best you can with it.” I follow it with gratitude that I am given a chance to learn more about what I can do. Adversity, via setback, is often the best tool to teach us about ourselves.

I don’t seek out setbacks, nor do I martyr myself in the middle of one. Rather, I take the “life gives you lemons,” approach: if I am stuck dealing with it, might as well make the most of it.

Despite what it sounds like, I don’t believe life purposely sets out lessons for us. The lessons are always there, it’s just a matter of, are we listening to them? Setbacks are one of those lessons we can’t avoid, so we should look to them not as keeping us back, but teaching us patience perseverance, and humility.

Each setback isn’t an addition to a lesson, it’s just a chance to deepen or refresh what you’ve previously learned.

Maintaining Focus

There isn’t one ideal way to handle a setback. But I have found one thing, besides self-compassion and gratitude, that helps me get through it: maintaining my focus.

A setback often derails us mentally and emotionally. We might want to complete a particular task this week, and an injury prevents that from happening. Rather than focusing on the injury beyond healing, focus on what can be done in the meantime.

Keep yourself focused while moving forward.

Sometimes it hard to keep that focus if it’s a long-term setback. If that’s the case, consider re-evaluating your goals, if only temporarily. Refocus on another goal that might help you achieve your sidelined goal. Look for alternatives, but keep yourself focused on moving forward rather than staying stuck in one place.

Respecting the Setback and Ourselves

The key to dealing with a setback is respecting the lessons and our ability to listen. Delays aren’t inherently a bad thing, though they do get a bad rap. They are frustrating simply because they put a pause on our expectations, and makes us feel stagnant. Yet, a setback can be a good thing.

I view setbacks as an opportunity to take a break. When I create the hindrance, often it’s because I am doing too much and not listening to my need to slow down. I unconsciously self-sabotage because it’s the only way I will listen to taking a breather.

When the setback is out of my control, it allows me to regroup, figure out what happened, and decide on my next step. Delays will enable us to take the time to reassess what is going on in our lives, especially if we usually don’t give ourselves permission to do so.

It is hard to cope with setbacks, but we can and will each time we experience one. And that’s okay.


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setting-a-positive-example-to-children

Setting a Positive Example

I haven’t had a parenting post in a while, so it’s time for one. If you are like me, and a parent with a chronic illness, thoughts of “how can I be a better parent” come up in moments of self-reflection. A constant concern I have is, am I setting a positive example for Jai? Am I being a good mother, especially in the moments my illness seems to take over?

I feel like there’s a lot of expectations placed on mothers, especially on how we project ourselves in public and private. When we have moments where we are vulnerable, we get frustrated. Coupled with a chronic illness, especially invisible ones where society forgets we are ill, it’s easy to feel overwhelmed.

For myself, in the moments I feel overwhelmed, I feel like I struggle to set a positive example. With my MS, I feel obligated to set an example about the importance of handling things out of our control in a positive way.

When we have a Little Clone

It isn’t always the case, but have you noticed being closely aligned with a parent in personality? More like your mother or your father? Or a nice blend of both? If you are a parent, you may notice your child favors you or your partner more in personality.

This may be frustrating because two strong personalities in the same home is a recipe for conflict. But it can be a wonderful bonding experience if approached properly. The parent whom the child favors is able to identify personality quirks and be sensitive to particular needs. Rather than being an adversary, the parent can be a valuable alley within the home.

When a child is similar to us, it’s a wonderful opportunity to see our own behaviors in their purest form. Children can provide a deeper insight to ourselves.

I find that Jai teaches me how to behave better. Observing his interactions on the playground, he does not get upset when another child steals his toy. Rather than getting upset, he’ll move on to another toy. It’s an opportunity for me to learn from his wisdom: focus not on the loss of the toy, but the opportunity to do something else.

I recognize his behavior is age/developmentally based. In a few months, he may not behave so passively in a similar situation.

In those moments of adaptability, I encourage his behavior. Likewise, I want to make sure he doesn’t pick up my bad habits. Rather than swooping in and letting Jai know that something negative happened, I try to be as non-reactive to keep the situation calm and under control. My instinct is a bad habit developed over the years: take the toy back while reprimanding the offending child for not knowing how to share. This teaches Jai to be aggressive in a negative way and I don’t want to encourage that.

If Jai is upset over losing something, it is better I show him how to ask for a toy back in a nice manner, rather than fight bullying with bullying.

Setting a Positive Example to Children

Children, even in their worst moments, provide us with valuable insight to our own behaviors. They observe our every moment, behavior, and style of speech. A few weeks ago, when I braked the car suddenly, I heard from the backseat, “what are you doing?” directed at the driver causing me to brake.

I knew in that moment I needed to be more aware of the language I used while driving around the city.

Consider this: next time your child behaves in a manner you find problematic, step back and see where that behavior was modeled for them. Was it from you? A co-parent? A secondary caregiver? School? If you find that it is a reflection or response to your own behaviors, consider finding a way to change it so you model the behavior you want your child to have.

This might be particularly difficult to achieve with a chronic illness, but it is still possible. Use your illness as a teaching moment: sometimes we cannot control our own behaviors because of an exacerbation, but we are doing the best we can with what we have.

When you mess up, rather than ignoring it, sit down with a child and explain what happened. Do not excuse it. Provide a reason to your thinking and behavior, or admit you don’t know why. Walk a child through how you plan to approach the situation in the future and acknowledge that you may not remember/achieve it the next time. Admit to your imperfection, and reassure the child that it’s okay to be human but not okay to hurt others. Finally, make sure you apologize to your child if necessary.

Treat your child, no matter their age, like the human they are with all the respect that goes with it. You’ll find that the example you set, no matter when you start, will eventually payoff with some patience and compassion on your part.


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Featured photo credit: Michelle Melton