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. 

Read More
Advertisements

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.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Canva