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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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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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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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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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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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