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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But I Can’t Ask for Help

Have you found yourself in the position where you need help, want to ask for help, but found you are unable to ask? You may even say to yourself, “I want to ask for help, but I just can’t.”

Something stops you from asking. You may know why, and you may not. Often, I am too afraid to ask because I don’t want to take advantage. Other times, I inexplicably cannot bring myself to ask. There’s just a mental block that prevents me from turning to a friend or loved one and saying, “I need help.” They have to drag it out of me.

I am telling you if you are unable to ask for help, you are not alone.

Chronic Illness: The Ultimate Roadblock

Depending on your chronic illness, you may physically be incapable of asking for help. People with Multiple Sclerosis can sometimes have a lesion that affects a part of the brain responsible for managing your mood. One of the earliest symptoms of MS for Karine Mather was anxiety and depression.

Both of these mental health concerns are linked to MS, and both can cause a person to struggle to ask for help when they need it most

MS, and maybe your chronic illness, can create a situation where you logically know you need to ask for help, but you can’t bring yourself to do it. It’s scary when this happens. It’s also incredibly frustrating.

So how do you manage to ask for help when your illness creates the ultimate roadblock?

Finding a Workaround

Sometimes what stops us from requesting help is the physical act of asking. I feel so emotional when I use my voice because often, my voice and emotions will betray my level of need. While I am not required to “be strong,” for anyone, sometimes it opens up a more in-depth discussion. Most of the time, I am not prepared to have this conversation. I need help accomplishing a task, and I don’t want to examine all the emotional baggage I am feeling behind needing to accomplish the task.

So, the best workaround I’ve come up with to date is using technology.

While texting is evolving to include emotion (emojis, memes, and case changes), it is still a relatively emotionless medium. Take advantage of it. Texting or emailing someone allows you to remove all emotion from asking for help and will enable you to ask exactly how you want.

Consider reframing your requests, so it isn’t asking for help. Recently, I was tasked with developing volunteer roles. I needed to write up role requirements, and afraid of looking foolish, I wasn’t sure how to ask for help in starting the process. Rather than directly requesting support, I asked for an example role write-up so I could understand the parameters. It allowed me to ask for help without actually asking.

Reframing is an excellent tool because it allows you to get your request out in the open without compromising your beliefs.

Public Resources

If you are too afraid to ask people around you or have a limited support system, consider looking to public resources. Each “official” website related to a specific chronic illness has an extensive repository of information about the disease, how to manage it, and where to seek help. For example: the National MS Society has a huge section dedicated to resources and support.

You may also have government options available by way of social programs. But if you are like me, you may not be “bad” enough to receive any of these public benefits. Note: I am okay with that for myself. 

If you don’t qualify for a public program, there might be a private program available to get you the help you need. Plenty of people touched by your chronic illness donate to private organizations that can provide the resources you might need at the moment.

Additionally, these sites can have trained volunteers who can chat online or over the phone with any questions you might have. While they cannot answer specific medical questions, they can provide you with resources and a direction to head in with your research. If you get stuck on something, asking a faceless stranger over the internet can be more comfortable.

Look to your healthcare team. If the team isn’t able to, or unwilling to, ask for a referral to another professional. You want someone willing to answer your questions, no matter how illogical or random they may be. The advantage of modern technology is that you can speak to someone online. So if you are in a remote area, or have limited options for specialists, consider finding one online if your insurance will allow it. Note: this is not an endorsement of Live Health Online, I am linking them purely as an example.

Make it Gig

We live in the era of the gig economy, so if you can afford it, consider using it to your advantage. You have sites and apps that can bring you stylists, handypeople, groceries, and take you where you need to go. You don’t have to put friends and family out if you are willing to pay the fee. 

Unfortunately, this means it will add up, but it allows you to “ask” for help. For some of us, it is easier to pay someone than feel like putting a friend out.

Don’t Go it Alone

Having a chronic illness is isolating. Being afraid to ask for help when you need it can further isolate you, but you don’t have to be alone. There are plenty of people in a similar position to you. Look to online support groups to see how others handle their disease.

While chronic illness affects everyone differently, we can find similar symptoms and experiences out there. People who have gone through it found what works, and shared their findings online. It’s what I try to do. Just know that your mileage may vary. You have a better starting point rather than reinventing the wheel.

Find a healthy online space where people strive to uplift each other, rather than remain in a negative mindset regarding the disease. Venting has a place for your mental health, but wallowing does not. Post your story when you are comfortable. Read and engage with the responses given. Plenty of people want to help you, even if they’ve never met you.

If you can’t directly ask for help, find all the passive ways in which you can ask. There are so many opportunities available to you with the advent of technology. You don’t have to be alone in your illness, even if it tries to isolate you.


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Featured photo credit: Canva