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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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Guest Post: Thoughts on Fatherhood

I sat down with Ash and asked him to write about fatherhood. Questions ranged from his thoughts on fatherhood before we considered starting a family to how much they changed after Jai was born.

Read his perspective below.


I didn’t really have any idea of what fatherhood would look like.

I was more afraid of the amount of responsibility that being a parent entailed and I was concerned with what I could mess up than with any real ideas about being a parent. So before I talked with my partner, I hadn’t really been thinking about fatherhood.

After some conversations, once the idea of being a father cemented itself and I started really talking to other people about it, I really only had the expectation that everything would change once I saw my child.

Read More