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Humiliation with a Chronic Illness

I’ve discussed how frustrating it is for me to ask for help, how the act of requesting help is a perceived admission of weakness. I’ve even highlighted the trouble I, we, sometimes have in the act of asking itself. To humble yourself before someone is humiliating, but this is for those without a chronic illness out there: having a chronic disease is humiliating.

Not being able to remember the details of a conversation I had five minutes prior is hugely frustrating, but typical for me. Having to cancel a social engagement because I am too exhausted causes more anxiety than if I went. Realizing that I am having an irrational reaction to a minor situation, but unable to control it causes a lot of shame.

These are the “in-the-moment,” examples of my MS humiliating me. I also have an unknown future ahead of me. While I try to be mindful and live in the moment, there are times where I must confront my future with the illness. I can’t be a grasshopper in my disease and live every day like it is summer. With a little one, I need to mentally and physically prepare for possibilities.

And these possibilities can be humiliating. The idea of asking for help if/when I reach one of these possibilities heightens my anxiety even if it’s all hypothetical right now.

Debilitating Disease

Has something fallen from your grip, and you know it’s due to the disease and not carelessness? Have you used store-provided scooters to get your errands done? Used a mobility cane to help you walk during an exacerbation, or because of damage done by one?

In each of these cases, you may have dealt with strangers’ stares, rude comments, or well-meaning looks from close ones. Humiliation comes not just from the outward expression of the disease, but how the condition impacts our egos. Each time we must compromise to accommodate the disease, there comes a moment of humiliation where we recognize the deteroation.

Intensifying the humiliation are strangers commenting how we should leave the scooters for those who need it; how we need to get out of their way because we’re moving too slow*; or you don’t look sick, so stop faking.

*I had an elderly stranger get snippy at me when I moved too slowly through the aisles in the days after my hospital stay. 

Admittedly, before I got my diagnosis, I did the same thing. While I kept my thoughts to myself, I often wondered if a person using a scooter or handicap placard needed them. Post-diagnosis, I am more sensitive to the fact that disability is invisible, and I shouldn’t judge strangers for using the tools available to them.

Most of us have experienced some negativity surrounding our illnesses by strangers. When these moments happen, like when the man got mad at me for being in his way at a store, it causes intense feelings of humiliation. It makes it hard to want to ask for help or take advantage of the support available to us.

Chronic Illness: the Humbler

A quick disclaimermy MS/chronic illness looks different from others. It’s the nature of autoimmune/chronic disease: each case is distinctive. I do not have to deal with the same issues as others, and I may never have to experience the same problems, but there is no guarantee the direction my MS will take. I may get worse; I may stay the same; I may get better.

I see my neurologist every year. At this point, it’s a simple check-in with my health. They like to know if I am getting worse or staying stable with my MS. Right now, I am maintaining, so it’s always a quick session. But the questions the neurologist asks are the same, and each time I go in, I am afraid of the day I have to say “yes,” to some of them. 

The question that scares me the most is: “do you have any issues controlling your urine?” My neurologist wants to know if I am incontinent, a symptom of progressing MS. I can continue to answer “no,” but there are moments in-between appointments where I am worried about my control. It might be symptomatic of my MS, or the fact I gave birth

Being faced with that question each time I see my neurologist is embarrassing, but I must be honest in my response. With incontinence affecting 80% of MS patients, there’s an excellent chance I will start experiencing it in the future. The day I answer “yes,” is the day my neurologist and I know my disease is progressing.

Knowing that there’s a chance I will need to wear urine control aids is humiliating. Let’s be realistic: the day I realize I need to start doing so is the day I have an accident. Hopefully, not in public, but it could happen.

Don’t Be Alone

In our most intense moments of humiliation, there’s a desire to isolate ourselves. Please avoid doing that as much as possible. Ask others for help or find ways to adapt to your illness as much as possible. Reach out to others for comfort, so you don’t feel alone.

I’ve said it often before: the chronic illness is isolating enough, don’t allow yourself to become further isolated.

Help is Temporary (and That’s Good)

If it helps you, remember this: everything happens in cycles. Life is one big cycle. Our exacerbations occur in cycles. You may be in a period where you need a lot of help, but it might be temporary. You may not always need as much support. You’ll figure out a way to adapt and do things on your own.

Keep that in mind if you are afraid to ask for help: this may be a short cycle, and you may not need to keep asking for help. While it is humiliating to ask, it will be a blip.

Chronic illness is humbling. Asking for help is humbling. But remember, acknowledging both and not giving into the isolation shows your resilience. The disease takes so much, don’t let it take what makes you durable.


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Is a Higher Power Necessary?

If you don’t have a higher power or belief system, is it necessary to have one to help manage your chronic illness?

No. No, it is not necessary.

If you have a higher power and feel satisfied, then this post is not for you. This is for the small percentage that are either ambivalent about their beliefs or actively do not believe in anything. This post is for those who have to navigate the all-too-familiar field of well-intentioned family and friends who say, “I will pray for you,” or “if you believe in this higher power, you will be healed.”

These forms of unsolicited advice can raise feelings of misplaced shame, put us on the defensive, or create an awkward interaction. If you find that you navigate these scenarios with ease, then this post may not be for you.

Instead, this post is meant as comfort for those who may have recently de-converted or questioning, and emotions might be rawer.

If It Isn’t Broke…A Disclaimer

The summary of this post is this: if you live without a higher power and that works for you, then do not let yourself get distracted by others telling you that you need one. Only you know what works best for you, and if you find more comfort outside of organized belief, then embrace that comfort.

Once I de-converted, I found more peace in my life. But it took a long time to feel comfortable with that peace. There are still a lot of raw emotions I am working through, so sometimes hearing the language can cause me stress and shame. 

I’ve learned that I need to accept the words and intentions of others with grace, not resentment or shame while standing firm in my decision.

The Distraction of a Higher Power

Most of the time, when people have a higher power or organized belief system, it is a built-in source of comfort. If you need a distraction, guidance, or a focal point, your higher power can provide that. Because of this, often for others who have a higher power, they want to share the comfort and peace they get with you.

It works for them, so it will obviously work for you. I am fond of saying this on my blog as much as possible: what works for me may not work for you. The same goes for belief: your mileage may vary.

Additionally, when I hear people tell me that I need to place my concerns in the higher power I deconverted from, it can be painful to hear. It reminds me of the negative experiences I had and pushes me back into a dark place. It puts me into an awkward space of not knowing what to say or wanting to respond sharply. 

Getting told to turn to a higher power becomes emotionally and mentally distracting. When coping with a chronic illness, being unnecessarily put into a space of shame, even if the other person is well-intentioned, is unhelpful.

If you do not believe in anything or think differently, hearing someone proselytize is irritating because you aren’t coming from the same starting point. If you don’t believe in anything, those words can ring hollow and feel like a wasted exercise on their part. It distracts from the opportunity to have a different or more meaningful conversation with them.

Unfortunately, it’s Not About You

When others start telling you what you need in your life, it isn’t about your needs. It’s about them and what they need to do.

When I came to this realization, I found it easier to handle these interactions. When someone tells you they will intercede on your behalf to their higher power, or that you need to believe in that higher power, it’s giving them comfort. It brings them comfort; therefore, it will bring you comfort, so they want to share it. Or they feel powerless, and the idea of appealing to a higher power gives them a sense of helping you. 

Now, I just listen to what they have to say, say “thank you,” and try to shift the conversation to something else. I find it strangely comforting knowing that someone cares enough to share this with me. Today’s climate is rather hostile to outward expressions of faith, at least in my community, and it takes a lot of courage for the individual to put themselves out like that for me.

Consider a Greater Cause

I mentioned this at the beginning of the month, the idea of a greater cause. A greater cause is not a religious belief, but something outside of yourself that motivates you in life. It can be a form of activism, volunteering your time, or a professional or health goal.

Finding a purpose outside of yourself can provide you a similar distraction a higher power gives someone else. It can ground you, guide you, and provide fulfillment. When others ask you what you believe, you can redirect towards this cause if you are open to having that conversation.

It can give you the strength you need to handle the awkward conversations because you do have something equally important in your life.

Know that you possess the ability to decide what is best for you. Others generally come from a well-meaning place when they tell you about their higher power. When they do, know that it’s not necessarily for you, but to provide them comfort. Shift the focus of the conversation away from the topic as graciously as possible, and reframe it as them caring genuinely about you.

It won’t be easy every time, but it might make these interactions less awkward.


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A Higher Power with a Chronic Illness

Approximately 84% of the world’s population is religious in some way. The number may be lower if we compare those who say they are religious, versus those who actively practice. It is safe to assume that the majority of the world has some sort of religious background. For many people, when dealing with a crisis or celebration of some sort, they reach to a higher power. This higher power connects humans to one another, reaffirms the community bond, and provides comfort in times of need. When dealing with a chronic illness, sometimes that higher power provides the strength needed to cope.

For September, the MS Mommy Blog will discuss the advantages, and at times the disadvantages, of having a higher power during a wellness journey. If you have one deity, more than one, or none at all, you’ll find that I will touch upon your situation at least once this month.

A Quick Disclaimer

If I linked you back to this post, it’s because of the following disclaimer.

The MS Mommy Blog takes a strict stance of not promoting one particular religious practice over another, nor will it disparage a specific system of belief. If I take lessons from one philosophy more often than another, it is not an endorsement.

Because this month will have a lot of conversations surrounding religion, I will be as broad and general as possible to be inclusive. If I do use specific examples or terminology associated with one particular religion, it won’t be to promote it over another. This has everything to do with the limitation of the English language and tap into Western cultural shortcuts.

All examples will be done in an honoring way: I will not criticize any particular system of belief. I will, however, address some of the mental traps we fall into as a result of religion, not because of the religion itself. This might be perceived as a criticism, but please do not take it as such.

To be all-encompassing, I will not be using the word “god” in any capacity. Instead, I will use the term “higher power” or “greater cause.” If you have a particular deity, that is your higher power. If you are not religious or an adherent to a traditional belief system, you might have a greater cause that you focus on (see humanism as an example of what I mean).

Looking Beyond Ourselves

Often, at the start of any wellness journey, there’s a call to look beyond ourselves. We might reach out to our higher power to help us start or give us the strength to move forward. Being afraid to try something new, no matter how beneficial it may be, is reason enough to need strength from wherever you can get it. If you are not religious, you may look for other motivations: a child, a partner, or just for yourself.

Whatever the reason, we are looking within to look beyond.

The act of asking a higher power for strength or finding a greater cause allows us to reflect on our life from an objective perspective. We can see ourselves as others see us, and see where we might need an extra boost. Then we can ask for help from our higher power, or see resources related to our greater cause. The act of asking for help is a form of externalizing our desire and can help propel us forward.

I often find that looking beyond myself helps. It’s usually in the form of providing an example to Jai, I see what I want him to do, and therefore, I must model my behavior, so he follows suit. I am looking beyond myself to make changes in my wellness journey, and I find more success because of it.

Finding Motivation Beyond, Maybe

If you grew up in a particular system of belief or are newly converted, you know what works for you. If reaching out to your higher power gets you the answers and comfort you need, then do so. But make sure whatever response you get back is honest and healthy. Sometimes we get a specific response (or lack of response), and it may not be our higher power, but our unconscious getting in the way. That’s the “maybe” in this section’s header.

If you are not receiving comfort or an answer encouraging your personal wellness, seek out a second opinion. Find a leader you trust within your belief community and seek counsel. Understand that they are fallible too, but your higher power should want you to be strong, find comfort, and be healthy. Your leader should help you get a more honest response that isn’t muddled with unconscious and discouraging thoughts.

No Excuses

Here’s where I am going to get controversial: do not use your higher power or greater cause as an excuse not to make positive life changes to manage your illness. Really think about what your higher power or greater cause asks of you. One that wants you to be healthy and managing your illness in the best way possible is reasonable. One that asks you to stay stagnant and be unhealthy may not be your higher power, but your own unconsciousness afraid of change.

If you find that after speaking with your higher power, it gives you an answer to stay unhealthy, you may need to seek outside counsel to get to the source of that answer.

Higher Power & Chronic Illness

So how can a greater cause or higher power help you with your chronic illness? That’s something we’ll be examining for September. You may have one, and you may not. Whatever works for you and keeps you motivated and feeling happy – that’s what matters most.

Your wellness journey is your own, and ultimately, you need to stick with what keeps you moving forward healthily.


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Positive Thinking Leads to Positive Actions

Since the 1952 publication of Norman Vincent Peale’s book The Power of Positive Thinking, there’s been a market for promoting positive thinking in the self-help circuit. It does make sense, and science backs it up: when we focus on engaging with our positive thoughts, we are less stressed and improve our health. The more we engage with positive thinking, the more it leads to positive actions in our lives.

We are marketed positive thinking as a way to increase our overall happiness in life. The issue is that happiness gets conflated with satisfaction. What we are truly seeking is total satisfaction with our lives, whereas happiness becomes a byproduct from that satisfaction. We can achieve joy, and therefore, happiness when we begin to shift our mindset from mostly negative to mostly positive.

To begin this process, we must self-reflect and be open to rewiring our brain to be receptive to positive experiences and thoughts.

Positive Thinking = Healthy Mindset

So positive thinking, what is that anyway?

The theory is this: if we start to incorporate more positive thoughts in our daily lives, we engage in a healthier mindset. Once we have a healthier mindset, we engage in more positive behaviors.

Anecdotally: when I started viewing myself with a positive perspective, I found I was open to doing positive things for myself. I have a hard time accepting myself as a decent person, but once I stopped thinking of myself as a bad person, I was more willing to eat healthier. I started to make healthier decisions regarding exercise. I decreased my desire for self-destructive behaviors. The idea of making healthy decisions became palatable because I finally felt like I was worthy of the effort.

It all stemmed from the moment I chose to engage with positive thinking.

Healthy Mindset Leads to Healthy Actions

The science is there: when a person develops a positive mindset, they are more inclined to engage in healthy behavior. You are more prone to go to the doctor to treat an exacerbation of an ailment you might have ignored. You re-prioritize your thoughts, choosing not to get distracted by things out of your control. You may even decide to reconfigure who you spend your time with, opting to be with people who leave you feeling good about yourself, rather than those who are toxic.

To be clear, this isn’t saying we take on a Pollyanna perspective and only view the good out there. We still acknowledge the negative and yet get caught in the negative thought cycle, but we spend less time in the negativity.

For those of us who spent a lot of time in the negativity, incorporating more positive thoughts is not a 180-degree turn, but a chance to be more centered in our thoughts. Be realistic, but also choose to be more positive in our realism.

Engaging with Positivity More

Find ways to think of yourself in a positive light. Celebrate your life as much as possible. Did you let someone in front of you in line today? How did that make you feel when you brightened their day, even for a moment? Engage in those good feelings you get when you do something positive.

Often we look to others to be our cheerleaders, our parents, friends, coworkers, and sometimes strangers. But the biggest cheerleader in our lives has to be ourselves. External validation is nice to have, but its the internal validation that’s more important. If you let that person in front of you in line and they didn’t acknowledge it, that’s okay. You didn’t do it for their validation or gratitude. You did it for yourself. If you feel good about doing it, who cares how others react?

Praise yourself for the moments you did something that makes you feel good. Don’t look around for others to do it. Engage with your positive thinking and positive actions as often as possible.

It will be gradual, but you’ll find that after some time, your actions will begin to reflect your positive thinking. Your feeling of self-satisfaction and its byproduct of happiness will increase as well.


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Learning to Manage Expectations

Learn to manage your expectations.

It’s one of the first things your healthcare specialist says to you after receiving your diagnosis. While my neurologist never explicitly said it to me, it’s implied. Granted, they have high expectations for my wellness, often higher than I had for myself. But when I was in the hospital, pre-diagnosis, that was one of the first things the hospital neurologist said to me in response to my health concerns.

Whether it’s been said or not, it’s something we learn quickly with a chronic illness. We must manage our expectations because we have no choice.

For many of us, we have the following expectations in life: we’ll be healthy, achieve personally, and go far professionally. Often these expectations get scrapped in favor of coping with a chronic illness diagnosis. We might have pain to manage that prevents certain exercises. Our fatigue gets to be too much that we cannot do the same personal tasks we once did. Or our workplace can only accommodate our illness so much before we see colleagues surpassing us.

The expectations we once had slip away and we feel nothing but discouragement. But do we have to let those expectations go?

John Gary Bishop says in Unf*ck Yourself that we should “expect nothing, but accept everything.” It’s perhaps the healthier way to approach the “manage your expectations” conversation. We should scrap all the expectations we have for ourselves and accept whatever life sends our way with an open mind.

This refers to the positive and negative expectations we place upon ourselves.

Why We Set Expectations

Why do we even set expectations in the first place?

In childhood, expectations are placed upon us and for us. Parents might expect us to take on a level of responsibility around the house, or they might share their desire to see us succeed when we become adults. We extrapolate this external expectation and internalize it for what we think we’re capable of doing. Expectations drive our dreams and our desire for achievements.

But rarely are limits placed on these expectations, and as a child, why should it be limited? We imagine being firefighters, doctors, and presidents as our career goals, not wanting to pick between the three. We expected to achieve anything, especially when told we can be whatever we want when we grow up.

Illness or not, we learn quickly that there are limits to our expectations. Not all of us will get into an Ivy League school. We will have to choose between a firefighter, doctor, and president for a career, if only to pick one to focus on at a time.

Life will not work out the way we expected. And then we get our diagnosis.

The Problem with Expectations

The obvious problem with expectations, at least at first, is that we are often unprepared for the letdown. When we don’t achieve the way we expected, it can feel like a failure. For some, that can lead us to shutdown and get stuck.

When we set expectations early in life and achieve them, it’s often viewed as a good thing. Rightly so, you set a path for yourself and achieved your goal. Rich Karlgaard writes about the problematic relationship Western culture has with early bloomers in his book Late Bloomers. Western culture is so hyper-obsessed with the Mark Zuckerbergs, Elizabeth Holmes, and Malala Yousafzais, that it overlooks those who quietly grind away to achieve their success later in life (30s and beyond).

Because there’s an intense expectation for early success, often when we leave high school or college without making some “30 under 30” list, there’s a feeling of panic. This can bring our personal expectations down, or cause us to stall out for a few years.

This is one problem with societal expectations: we misplace expectations on people who may not be emotionally mature to handle the pressure (for reference: Elizabeth Holmes, Martin Shkreli). When young people are pushed to succeed early, they forget that a window does not close as soon as they turn twenty-five. That window for success stays open their entire lives.

If you are alive, you still have the chance to bloom and succeed.

The second problem referenced in Karlgaard’s book is that early bloomers do not know how to handle failure in the same way late bloomers do. When you are a late bloomer, you get used to “failure;” you get used viewing it not as a failure but as a learning experience. Late bloomers are better equipped with managing their expectations.

Learning to Manage Expectations

In life, there are two sets of expectations: “positive” and “negative” ones. This is a false binary, but I am going to use it for clarity sake. Positive expectations are the goals we set for ourselves that we want to achieve. Negative expectations are the times we don’t believe we can achieve it.

At the time we receive our diagnosis, we might drop our positive expectations: career, family, personal goals; and replace them with negative expectations: lack of mobility, exacerbations, and limitations.

For example: before my diagnosis, I intended to become a University professor. After my diagnosis, I dragged my feet because I assumed I wouldn’t be able to handle the rigorous testing due to memory issues. I replaced a positive expectation, “career goals,” with a negative one, “my memory prevents me from achieving.”

If you are like me, a late-bloomer, hopefully you know how to handle disappointment and also view perceived failures as learning experiences. Transfer that awareness to how you view your illness: manage your expectations away from the negative reasoning of “I can’t do this,” to positive “why not try it anyway?”

Often after a diagnosis, we work our way through grieving for our health. It’s a healthy and necessary process, but sometimes we decide to get stuck on the negative thinking. It’s easy to look at all we think we can’t do, rather than focus on what we can do.

But you might surprise yourself if you take a moment to release the expectations you place on yourself. Yes, you may be struggling to walk or get out of bed today because you physically cannot do so, but does that mean you should indulge in the negative expectations of what you can’t do?

No.

There was a time after my diagnosis where I didn’t think I could run or do anything active due to numbness and fatigue. I was in a negative expectation mindset. I actively decided to remove all expectations on myself and said, I can do something. It won’t look the same as a person without an autoimmune diagnosis, but it will be something.

The moment I removed all my expectations (negative and positive), I found I was able to achieve.

I actually found I went farther than before my diagnosis because I removed all expectations I placed upon myself and my abilities. Even when I was “healthy” I had numerous expectations that prevented me from achieving.

This is because when we manage our expectations by removing them, we remove the mental obstacles that prevent us from attempting in the first place. We go out and attempt to achieve without thinking about the limitations we might have. We may still stumble, but it isn’t a failure as much as it’s a learning experience.

If you were an early bloomer, this is your opportunity to bloom once again. Or, as it is in my case, my chance to bloom later in life.


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