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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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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weakness-asking-help

Is it Weakness to Ask for Help?

Weak. Loser. Faking.

These words jumble around my head when I want to ask for help. I am afraid of appearing weak or taking advantage of others that I don’t ask for help even when I should. It’s hard to move beyond our thoughts, but when we do, we show our greatest strength. We acknowledge what we can handle and what we cannot. It’s is humbling asking for help, but it is a test of our character and the character of those around us.

Getting to that point of asking for help is hard. There’s a lot of cultural and personal baggage we must work through first.

Western Culture & the Weakness Narrative

My insecurity over asking for help does not come in a vacuum. Western culture, particularly in America, has a negative attitude for those who ask for help. If you have a chronic illness and need to go on disability or welfare, you know what I am saying. Drug testsnegative nicknames, and accusations of freeloading all make up the national narrative surrounding people who need to ask for public help.  

You can make the argument that these are examples of public help and not the same as asking those immediately around you. When the national discourse towards support is so hostile, it’s challenging to feel comfortable broaching the subject. Countless times I’ve wanted to start a conversation with an individual only to find their feelings on a particular matter do not align with mine, and they are rather passionate about it. It’s easier to stay silent than to open up.

This attitude against helping others is unrealistic and isn’t the truth. We often heard success stories and the individual thanks all of the people that helped them along the way. Mentors, networks, sheer luck all play a role in getting a person to meet their goals. 

But when we have an invisible illness and hear stories of discrimination, it is hard to want to reach out for help. Even if it’s getting a placard to park closer to a store because sometimes its easier to walk a bit farther than deal with notes, stares, or rude comments. 

If you live in America, as I cannot speak to other countries, it is a hostile environment to ask for help even if getting help is normal.

Internal Fears & Insecurities

Admittedly, much of what I just said has everything to do with personal insecurities. You may be lucky enough not to have a problem asking for help. But sometimes our illnesses tap into our insecurities by the very nature of the disease itself. We may not be able to control the feelings of uncertainty because the illness takes over.

But if you had insecurity over asking for help before your diagnosis, the chronic illness might exacerbate that insecurity. Now that I need help from others, I am more afraid to ask. I don’t look sick, I run frequently and act “normal,” so when I ask for help, I must be trying to take advantage?

These fears are unreasonable, and I completely acknowledge that, but I can’t stop them from popping into my head and preventing me from asking for help when I need it.

If we can ask for help, and do so with respect, then we won’t take advantage of others. You will probably flatter your friends when you ask because you’ve trusted them with a part of your life you may not show often. Think about the time others have asked you for help and how that makes you feel. You probably appreciate the opportunity to help someone you care about in some small way.

It shouldn’t be different when you are the one asking for help.

The Problem with Asking for Help

When we ask for help, there is a chance of rejection. What happens when we put ourselves out there, and we get rejected or a wishy-washy response? How do we handle that?

We also open ourselves up to criticism, comments, or unsolicited advice. How many times have you heard the “well, if you try this, my friend-of-a-friend-of-a-friend found it helped them?” When you need help, it’s an open door for those sorts of comments. 

Rejection and “well-meaning” comments bring feelings of shame, so we might pre-empt those feelings by not bothering to ask.

Remember this: only you can let yourself feel shame. Only you can make yourself feel weak. Regardless of the response, you can choose to let the comments bother you, or you can decide it’s not worth it. If there is a pattern of a friend or family member making you feel wrong with their comments, then perhaps it’s time to move them down your life mountain.

Breaking Free from the Mindset

Ultimately, we have to suck it up and ask others for help. It’s easy to say this given societal pressures against asking for help, but we have to put our health first. If you want to be a help to those closest to you, then you must take care of your needs first.

When you ask for help, you aren’t revealing weakness, but strength. You are putting your vulnerabilities out there and showing that you are self-aware enough to need help. Often, I find people respond favorably to me when I unapologetically show my vulnerability.

Only you can make yourself feel exposed. People might comment to help support those feelings, but you can reject them in the same way they are rejecting you.


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reaching-out-to-others

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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blaming-god-for-my-illness

Who is to Blame?

After getting a chronic illness diagnosis, there is a flood of emotions and thoughts for the first couple of weeks. One significant feeling is strange relief in finally having an answer depending on the length of your search. But what follows behind is the dark cloud of, “why me?” It’s tempting to blame your higher power for your illness.

To a certain extent, externalizing the blame can be healthy because often it isn’t our fault we got sick. The source of many autoimmune diseases is nebulous or entirely out of our control.

When you blame your higher power, you run the risk of negatively impacting your faith or misplacing it all together. If your higher power is a stable source of comfort and you feel betrayed by them, then the internal conflict that arises can be destabilizing.

The Chronic Illness Crisis

Chronic illness creates a rift in so many different parts of your life. It can negatively impact your intimate, professional, or higher power relationships. There is an existential crisis that occurs when you get your diagnosis. So many overwhelming emotions and very little room to navigate through them. 

When you get into a place where the dust settles, you may be left wondering, especially if you have a belief system, why it is happening to you. How did this happen? Why did this happen? What did I do to deserve this illness?

If you speak with your higher power and hear silence, it can feel particularly frustrating. Often, we are taught to believe that they will be there for us, comfort us, and protect us. Or if you are taught that these sorts of things happen for a reason, it is natural to want to blame the higher power. Rarely do we find a good enough reason to be given a chronic illness.

More concerning, we may even feel to blame for the illness. That we get it because we aren’t following a particular path our higher power laid out for us. Even worse is if an outsider tells us that’s the case.

So did your higher power turn their back on you? And who is actually to blame?

Happenstance or Punishment?

Is your illness a coincidence, or was it some test/punishment put before you?

That’s a question only you can find the answer. I want to tell you that it is not a punishment, that your higher power had nothing to do with giving it to you or allowing it to happen, but that isn’t my place.

If it helps to view illness as a test, and that creates a healthy challenge for you to work towards overcoming, then do it. But if it brings you into a dark emotional place and causes a conflict with your higher power, look towards your options. Your higher power wants you to be healthy and find comfort in them. See what you can do to get back into that space.

When you blame your higher power, you place yourself in the role of victim, and that creates a negative emotional cycle that can spiral out of control. You are a victim of the illness, yes. But you don’t have to give in to the mentality which can lead you to feel stuck.

Who is Responsible for my Illness

Depending on your type of illness, no one.

I have plenty of spots in my life where I can say I am partially to blame for getting my MS. I didn’t get enough vitamin D growing up in New England. I got mononucleosis as a child. But what if I drank a cow’s worth of milk a day, never got mono and still got MS?

It’s pointless to blame myself because I genuinely have no clue why I got MS. I view it as the luck of the draw. If I spend time reflecting on the “shoulda done this,” I would drive myself crazy. I accepted I am not responsible for my illness.

I was deconverting around the time of my diagnosis, but I know precisely my response if I was still religious. It would be a back and forth between blaming my higher power for allowing it to happen and blaming myself for doing something that displeased my higher power. I wouldn’t consider the diagnosis as something that happens in life. I already had a lot of emotional pain with my higher power. I would have either gone to an even darker place emotionally or begun the process of deconverting to protect my mental health.

Yet, my higher power was not to blame for my diagnosis. When I was younger, I often thought of my higher power like a child that flicked bugs for their pleasure. I was a bug, and so they put negative lessons in my path to make me miserable. It wasn’t until I could look back and see what was really happening: I was experiencing the same sort of stuff everyone else did. I was not being singled out as I thought.

Maintain Your Source of Comfort

You need as many sources of comfort in your corner with a chronic illness. If you feel that you must blame your higher power for your chronic disease, consider finding a leader within your community to help you through the healing process. Make sure it is someone you trust, and remember they are fallible too. Their interpretations may not be healthy either, so you may need to search around for someone who provides you the comfort and answers you need.

Blaming your higher power will cause a rift in your relationship. If a relationship brings you comfort, then you want to maintain that connection. It will give you the emotional and mental strength you need for your flare-ups and treatments. Do what you need to do to repair that relationship so you can focus on your health.

If it helps, consider placing the blame where it belongs: circumstance. It’s a random confluence of events that led to your health getting to this point, not you or anything else. While it is a rather abstract thought, and sometimes that does not bring the same level of catharsis, it is healthier than blaming yourself or your higher power.


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