Trying to Avoid the Hassles of Healthcare

By Matt Allen G

3 min read

Wouldn’t it be nice if you could just go see your neurologist when your MS starts to act up or you’re not feeling well? Just wake up in the morning, realize you’re not having a good MS day, hop in the car, drive to your neurologist’s office, and leave half an hour later with an order for IV steroids? How fantastical does that sound? To be taken care of, from start to finish, and be able to solely focus on taking care of yourself.

The challenges of seeking care for my MS relapse

As I’m certain you know, it’s not that simple. Unfortunately, at least in my own experience, healthcare can be a bit of a hassle! Sometimes, especially when I’m not feeling my best, I just don’t want to deal with it even if that means that later I will have to pay a price.

My least favorite part of a flare or relapse

It really sucks to wake up and almost immediately realize that something isn’t right with your body. That your MS is acting up; be it a small flare or a full-blown exacerbation. After living with this disease for over 12 years, I know exactly what is ahead of me for the next few weeks.

My vision will almost certainly be blurry, if not doubled. My cognitive function and fatigue levels are definitely going to suck more than usual. I’m more than likely going to slur my speech, and probably trip over my own feet when trying to walk thanks to foot drop. Those are just a few examples of what a typical MS flare means for me. However, before I even get out of bed, what I really dread on those days is trying to seek care.

What should be a simple phone call

I’ve been through a lot of doctors since my diagnosis in 2010, so I understand that not all doctors’ offices are the same. Just like insurance, the pharmacy, or any other medical facility. That said, there does seem to be one constant; a simple phone call is never easy. No matter what I need.

Waiting on hold

I feel like every time I pick up the phone to make a healthcare-related call, it’s almost guaranteed that I’m going to be stuck on hold for much longer than I get to talk. Maybe I’m not actually on hold for that long, but when you feel like crap, five minutes can feel like an hour. Especially when you keep getting transferred around and having to repeat yourself to each new representative.

Stuck in the middle

Heaven forbid I have to contact more than one location. This typically results in what I consider the most frustrating part of making healthcare-related phone calls. Essentially being stuck in the middle of two people trying to communicate with each other who don’t want to do the whole “talking on the phone” bit. So instead of them picking up the phone and calling each other about what they need, they make me call each other for them, and relay their messages back and forth. It’s probably the best way to take the longest amount of time possible to complete a simple task.

Sometimes I just don’t want to deal with it

So, can you really blame me for wanting to avoid all of that when I am feeling terrible thanks to MS? I mean, I don’t even like doing that crap on my best days! My doctor doesn’t pay me to be his office’s personal assistant...unless you consider my medical care to be compensation. Hmmm. Well, in that case, I guess it really is like a job. I might not want to go, and I might hate doing it, but if I don’t? I’m going to be in a lot of trouble...anyway.

I know it’s pointless

I suppose what makes this all so frustrating is that while I’m trying to avoid the inevitable I’m totally aware that it’s most likely only going to hurt me. By delaying my care, the MS flare I needed care for in the first place is only going to last that much longer. It may even increase in severity. And when it does? I never feel like avoiding those phone calls was worth it. I should've just ripped the Band-Aid off!

What about you? Do you ever find yourself putting off the care you need because you don't want to deal with the hassle of it? Do you have any tips for people who also find themselves in this position? Share in the comments below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Gracehunter Member
This! I just want to give up! PLUS having BEYOND brain fog. Sort-of feels like I'm being told to "advocate for self" and makes me seriously doubt all the doctors and the whole system. There should be a option for me, like dogs and cats. I would not make my dog go through this. I'm not suicidal. I have someone depending on me. I just want to be nice again. 
1. Lori Foster Member
 Hi <inline-mention username="Gracehunter" user-id="6684407"/>. I hope you know that we are here for you when you need someone to lean on. Gentle hugs. - Lori (Team Member)
kimberlybthatsme Member
<inline-mention username="Matt Allen G" user-id="4043727"/> I am SOOOOO glad you wrote this article! I can't even tell you the times I wish there was a hot line into the docs office that could get you care immediately when having a flare. I have heard of this allusive care team for MS, that you have a designated MS nurse you can call and she can help get the ball rolling on what is is you need care with. Very allusive and hard to find, I've searched deep into the forrest for this person with no luck. If I find her or him I will let you know (lol) I have been not doing that great (especially in October) I had a telemedicine call to my MS doc and she said I should go to the hospital next time I feel like that...so my follow up question was...does the hospital know what to do with a person who walks in and simply says, "I'm having an MS flare"? She assured me that they do. Since then there were 2 specific occasions where I should have carried myself up to the hospital and uttered those words, however I just didn't want to deal with the long wait in the ER, potentially getting sick from being in the waiting room at the ER and then getting back there and them saying, we have no idea why your doctor would tell you to come here. So I just put it off, like so many other health issues. I just deal instead with the SEVERE pain, along with the vertigo, the balance issues and the falls and move on. Thanks again for this article, I'm glad to see I'm not the only one who goest through this.
1. Lori Foster Member
 I hope it helps, <inline-mention username="kimberlybthatsme" user-id="3958502"/>. Gentle hugs! - Lori (Team Member) 
2. Gracehunter Member
 <inline-mention username="kimberlybthatsme" user-id="3958502"/>my experience: hospital = quick MRI. I waited (and wondered why the neurologist kept saying that; the MRI at spine clinic scheduled, earliest, a month out). I was decling, fast. I called, several times, during covid. They would say, "if you are concerned you should go to ER". Uh. Why can't they say "go to ER, they can do a MRI. You need a MRI". And this is the beginning of figuring it out all by myself. I should have gone to ER.
Kim Dolce Moderator & Contributor
Welp Matt, you've aptly described my thought process on the pros and cons of contacting my neuro whenever the possibility of a relapse looms large. In fact, I've been in touch with my new MS specialist (first saw him in July, but he still has that *new car smell*), and he has been reluctant to prescribe steroids for a worsening of MS symptoms since then. However, he has very good reasons that align with my own thoughts about whether to use them as readily as I have in the past. I was getting stronger, only I backslid into dizziness, leg weakness and cog fog while using THC for chronic insomnia, and told him so. He commended me for being in touch with that, and let me know that indeed THC causes all manner of symptoms that can mimic an MS relapse. Stopping THC returned me to baseline, so I called it right! My takeaway? We need to talk to our neuro about our symptoms, and look at the bigger picture of what else is going on too. It isn't always MS.
zeus73 Member
I am so fed up with trying to get the care I need when I need it. It is an exhausting and frustrating process getting a doctor to take care to listen to me, to register that I may need more than a standard response, to be respectful of the knowledge I've gained during my 30 years since diagnosis and to take care to address my problem in sometimes slightly creative ways. Instead, they almost appear to IGNORE that I have MS. As I write, I am 10 days into what the doctor told me is a "common cold". Ibuprofen and mucinex, she said. She got negative results for covid, flu and strep. Nothing with MS is common. This is like no cold I've ever had and I'm 71 years old. It's so hard to drag myself back in to the office, retell my history and wait with no guarantee I'll get treated any better than the first time. 
1. Lori Foster Member
 I hope you are on the mend soon, <inline-mention username="zeus73" user-id="4090890"/>. If you are still feeling this awful ten days into a cold, you clearly need more than ibuprofen and mucinex. Have you considered finding a different doctor, someone who is willing to learn more about MS and will be a true partner in your care? In the meantime, I hope you are drinking tons or fluids, resting whenever you can and maybe taking some extra vitamins. It sounds like whatever virus you are battling is really draining your body. If your symptoms don't improve or if they worsen, you might also want to consider reaching out to your neurologist. All this stress on your body might be making your MS symptoms worse and make you feel like all of your symptoms are related to this virus. There might be something your neurologist can do to help Thinking of you. - Lori (Team Member)
2. Matt Allen G Moderator & Contributor
 <inline-mention username="zeus73" user-id="4090890"/> I feel like MOST doctors don't really care about us having to wait so long for care because they think everything operates on THEIR schedule... as if we could tell our MS, "hey, chill out, the doc can't see us for another month" and our MS will say, "Oh, ok, so sorry, I'll stop getting progressively worse by the day"
zeus73 Member
Thanks for the support. Ive returned to doctor to see if they are going to help me. Yes, my disease has ramped up because I'm sick. If I don't get help today, I'll try my neurologist. 
1. Erin Rush Community Admin
 <inline-mention username="zeus73" user-id="4090890"/>, I hope the doctor offers some beneficial options for you! And definitely *do* reach out to your neurologist if the doctor isn't helpful. I sincerely hope you start feeling better very soon. You know your body better than anyone else and if you know something is wrong, well, something is wrong. And you deserve to have your concerns addressed and properly treated. Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
caninemom6142 Member
One of the things I learned from one of my last Neuro's, an MRI doesn't always show what's going on. She told me she's had patients in front of her who's eyes were crossing, patients who were definitely showing signs of exacerbation and yet nothing showed up. I've had a great many MRI's over the years and have had the same experience. Don't put all of your faith in an MRI, or any doctor for that matter. I've had too many bad experiences.
Matt Allen G Moderator & Contributor
Oh definitely, especially if the MRI machine being used is lower-powered (measured in Teslas).

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