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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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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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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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The Power of Others

When dealing with a chronic illness, it is sometimes our deepest desire to enlist the help of others. We might be too afraid to ask on the surface, but unconsciously we desire connection to others, especially when we feel alone. Often people want to help us, but can’t or don’t know how best to do so. Sometimes the best thing they can do is pray or send positive thoughts our way.

Is the concept of “thoughts and prayers” actually helpful? Or is it something we say to each other, and accept on our behalf as low-effort?

I think it boils down to your perspective. If you are a glass-half-full person, then having someone pray or reflect on you is helpful. If you are a glass-half-empty person, then it might be a hollow offer.

How can others help you through your health crisis? If you are new to my blog, please review this month’s disclaimer before reading any further.

The Power of Prayer (or Positive Thoughts)

As a teenager, I remember sitting and listening to my religious leader “cite” a study on the effect of prayer for those in crisis. I use quotes not to disparage, but because the leader was extremely vague about the study, the details, and did not provide resources to find the study on our own.

Reflecting back, I believe they were referring to Dr. Randolph C. Byrd’s 1988 study, “Positive therapeutic effects of intercessory prayer in a coronary care unit population.” The study found that participants who received intercessory prayer fared better in their follow-up appointments than those in the control group, who received no prayer at all.

Unfortunately, subsequent studies found that Dr. Byrd’s 1988 study to be at best flawed, and at worse irresponsible. Relying on prayer, regardless of the religion, to heal a patient can prevent the patient from receiving the necessary medical intervention needed to help with the illness. Each study that comes out relating to prayer and health finds little correlation between prayer and improvement of health.

Here comes the “but…”

While prayer itself may not change the outcome of a medical diagnosis, there is something behind knowing that others are thinking about you. It may not improve your health, but do you feel comfort when you know others tell you they are thinking/praying about you?

Unfortunately, I ran into a bunch of dead-ends in my research for this post surrounding the benefits of having others think about you. Current trends are to not worrying about what others think, and focusing solely on self-care. Both of these are positive in its own right, but it doesn’t answer the question: what are the benefits knowing others are thinking about us?

What I am about to say is speculative and unscientific: I believe knowing others think about you, whether it’s via prayers or positive thoughts, provides comfort. It allows those of us with a chronic illness to know we aren’t alone. Others may not know our experience, we may be alone (mentally) in our disease, but when others care for us to spend a few moments out of their day to reflect on our journey, it means a lot.

Going Beyond “Thoughts and Prayers”

If you are reading this as a friend or family member of someone with a chronic illness, there are some things you can do to stretch out your “thoughts and prayers” for them.

Use the time you reflect on them and find ways you can help. Sometimes, when we say we’re thinking about someone, it’s the most we can do. That’s fine, but consider doing something in their honor.

What You Can Do to Help

  1. If the person is dealing with a massive health crisis, consider getting yourself screened. For example, if they have cancer, try to get tested for that particular form of cancer. Or, get yourself screened as a potential donor for them or in general.
  2. Learn all you can about their health crisis and be better prepared for how to engage with the patient. In your research, find out what other patients say about the “dos and don’ts” in conversations.
  3. Donate money in the person’s honor towards research for their illness.
  4. Share across social media the latest information and research on the illness, but make sure to get their consent before tagging them.
  5. If you can physically help the person, take them to appointments or for a social outing of their choosing.

There are many other ways you can help someone with a chronic illness to extend the efficacy of thinking about them. You just have to find what works best for you and them.

Powerlessness and Control

Often, those in our lives feel powerless when we get a chronic illness diagnosis. They stand beside us, hold our hand, and do everything to help us manage our illness and still feel like they can do more.

Prayer or reflecting on us is an additional way to feel like they are helping. It’s calling on a higher power or the universe to intercede on our behalf. While the answer may never come, or be positive, it’s yet another way for our friends and family to feel in control in an out of control situation.

Sometimes saying “I will pray/keep you in my thoughts,” is enough to empower the person to go beyond the statement and spring into action.

When faced with powerlessness, the smallest action can help someone regain a sense of control. Next time someone says, “I am thinking about you,” think not of it as a common thing we say when there’s nothing to say, but rather a way of providing comfort at the moment.


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Focusing on the Positive

I struggle with the idea of focusing on my positive qualities. It became so ingrained that I am a bad person, that the idea of having positive qualities can be physically painful at times. When asked by others to name something I appreciated about myself, I often balked at the exercise, trying to find the most superficial, least offensive thing I could name: my laugh?

In an awkward couple of seconds between the question and my response, I often have a tightness in my chest coupled with intense shame for seriously considering the idea that there is something good about me. I struggle to take a compliment, and I am known to self-sabotage an opportunity if I know I will succeed.

When I recognized the unhealthy relationship I had with my positive qualities, I realized I needed to not only examine it further, but I wanted to learn to celebrate the stuff I loved about myself. If I were to heal my painful internal narrative, I would need to start countering it with some facts about myself: I am a decent person, and it isn’t arrogance to say that.

For the rest of this month, I will be discussing the importance of highlighting our positive qualities, illness included, as a way to develop a healthier relationship with ourselves.

Learning to Fall in Love

You may already love yourself, and that’s a wonderful thing. No one is more deserving of your love than yourself. This month will hopefully serve as a refresher course of why you fell in love with yourself in the first place.

But if you are like me, you need to find a way to fall in love with yourself. You may be searching to do this right now, which is why you landed here, or you haven’t realized that it’s a necessary step in the self-improvement journey.

While this next step should be fun, it may be painful for you as it is for me.

That pain is part of the process of developing any new relationship. When you try to fall in love with yourself, you are fostering a relationship just as you would with a potential lover or friend. There will be awkward moments where you’ll wonder if you messed up; where you are uncertain if the other person will even like you back; or where you’ll discover something new that mildly annoys you. The comfort is that the other person in this relationship is you and they literally are not going anywhere.

So this is an opportunity to freely explore yourself, one where you can remove judgment because in the process of getting to know yourself better, there is no right or wrong way.

To get you started, take a few minutes to figure out what you are comfortable admitting you like about yourself.

Listing off our Positive Qualities

If you follow the weekly newsletter, you may have done this exercise already: list off five things you deem positive about yourself. For now, keep the list to what you are comfortable admitting to yourself.

This list can be as superficial as loving how you sneeze, or as deep as your ability to be a quality baker/cook. Make a list quickly, without overthinking it, as this will allow you to unconsciously list what is important. Sometimes when we don’t overthink something, we allow ourselves a glimpse into our deepest truths.

I find when I do these sorts of exercises, and I overthink it, I will backtrack and put down the “right” answer, thus skewing the intended outcome. When we are learning to fall in love with ourselves, we have to do the number one thing all relationship experts agree on in a two-person relationship: being honest.

Since I am also on this journey of learning to fall in love and developing a healthier relationship with myself, here are five things I came up with in my exercise:

  1. My personal drive and motivation to accomplish goals
  2. My laugh and how it can be infectious for others
  3. My cooking/baking abilities and adaptability in the kitchen
  4. My sense of humor
  5. The love that I have for others

The Struggle to Love

You may find, like me, that making these lists are the start of that uncomfortable feeling we get. Admittedly, these lists are a tad silly, but they serve a purpose. To physically manifest our positive qualities. Sometimes we have these ideas about ourselves that float around our head, but when we take the time to write the idea out on paper, we make the idea “real.”

I feel foolish admitting to these five things, even now, because of the embarrassment I feel about myself. If I allow this embarrassment to control my thoughts and actions, I won’t allow myself to feel something for myself. I will remain afraid to take steps to fall in love.

Like approaching a crush, we might talk ourselves out of an opportunity to put ourselves out there because we fear rejection. Our negative self-talk will try to reject us, but we must persevere. We want to love ourselves despite what our negative narrative tells us.

These steps, like any relationship, will come slowly. Overcome the initial embarrassment in favor of reaching out for connection. Take it slowly and see where your unconscious takes you as you grow more comfortable with the idea of loving yourself.

Celebrate Ourselves

As we hurtle through July, take some time to celebrate yourself any opportunity you get. Achieve a small goal? Celebrate by allowing yourself some kind words of encouragement. Overcame an obstacle? Allow yourself a pat on the back. Find ways to treat yourself in a healthy manner.

Be open to any and all opportunities that come your way to celebrate you.


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