When people hear you’re chronically ill and unable to work, they will often say things like “Lucky! I wish I could stay home and do nothing all day!”, as if we’re just sitting home relaxing all day, having the time of our lives. What people don’t realize though is we want to work. We wish we could work. We’d gladly trade lives with you! You want to be sick 24/7? Go right ahead. I’d take going back to work to having multiple chronic illnesses any day, we all would. What others really don’t realize is having a chronic illness (multiple chronic illnesses especially) is like having a full-time job.
- So many doctor’s appointments
The average person (in America, at least– Americans see their doctor less than in other countries. Likely because of our horrible healthcare system and costs) goes to the doctor four times a year. Personally, I think that number is significantly lower– probably closer to once a year. A lot of people I know only go to the doctor only when absolutely necessary, like if they need an antibiotic, and that’s it.
When you’re chronically ill, you’re always at a doctor’s office. Before COVID, I was at a doctor, specialist, and/or physical therapy multiple times a week. I was going to physical therapy weekly, seeing a therapist, going to my primary care physician pretty often (which I still do, but often via telemedicine now), seeing a cardiologist, a neurologist, an endocrinologist, and more. I’d have multiple appointments each week. There were weeks without any appointments, but most weeks I had at least one.
When you’re going to the doctor that often, how are you supposed to hold down a full-time job? It’s impossible. I’d need to take off from work at least once a week, and that’s not even for feeling sick, that’s just to make it to my appointments.
Most doctors and specialists only have office hours during the average workday, usually from 9-5pm. There are a few that may have one day a week they work later, but it’s still usually only 6 or 7pm in my experience, if you’re lucky.
On top of the normal appointments, I had three or four cancer scares (the scares included blood cancer and thyroid cancer, just to name a few) over the past few years that kept me going back and forth to different doctors to try to figure it out. During these times, I was getting so much testing done and seeing so many new doctors.
It gets overwhelming, to always be at the doctor. But when you have multi-organ chronic illnesses that affect the full body, you don’t have a choice.
2. The symptoms are never-ending and constant
Just when I think I’ve experienced every symptom possible for my chronic illnesses, a new one pops up that surprises me and knocks me down on my butt. I didn’t even know you could get some of these symptoms!
I am always experiencing at least a dozen symptoms, at all times. There is no single moment in my life that I am without multiple symptoms.
I am never without chronic pain– a headache, neck pain, back of the head pain, jaw, and back pain are the constants. On top of those, my muscles are in constant spasm in multiple spots. I’m always dizzy, and have been since 2013. The brain fog feels constant, but the severity of it definitely ebbs and flows. The fatigue is deep and strong, and I am never without it.
Then there are the symptoms I get every day, that I don’t live with 24/7, but do happen 365 days a year, multiple times of day. Those include all the POTS presyncope symptoms when I stand, especially after lying down or sitting for more than a few minutes– tachycardia (heart rate above 100 beats-per-minute) causing palpitations and a racing heart. Weakness, lightheaded, extra dizziness that makes me feel like I’m about to lose consciousness, vision diming that makes me realize I am seconds away from actually fainting (presyncope), but I somehow never do. Numbness and tingling in my extremities, fingers, and lips (why my lips? I don’t understand it), feeling unbalanced, and a sharper, throbbing headache. These are what I experience every time I’m vertical.
There’s also the random symptoms that pop up on a daily basis, but change day-to-day. Swelling in ankles (edema), feet, face, fingers, etc. for no apparent reason? Check. Foot pain that is at its worst after I am off my feet for a while? Check. Random rashes and hives? Check. A migraine with aura? Check. Random nausea? Check. You name it, I’ve experienced it.
3. Making & managing appointments
I spoke about how going to appointments is time-consuming, but so is making the appointments and managing all the doctors you have to see.
Making a doctor’s appointment isn’t as easy as you might think. For me personally, calling doctor’s offices gives me major anxiety. I deal with it and I do it because I don’t have a choice, but it definitely isn’t easy for me. Why the anxiety? Because it’s overwhelming, and the office staff at doctor’s offices can be rude and mean, and completely unhelpful.
Besides the anxiety aspect of it, it gets really complicated making doctor’s appointments for multiple doctors.
My health insurance company recently started requiring referrals via my primary care provider for all doctor’s appointments. Now I need to go through my doctor to get all appointments approved, then I need to make the appointment with the other doctor, ask for extra information that I need to call my primary’s coordinator back with, and hope that everyone on both ends are doing their jobs.
The problem is, someone always drops the ball. Whether it’s the coordinator from my primary who doesn’t send the paperwork over to the other doctor’s office, or more often, the other doctor’s office who says they never got the referral, even though it was sent.
Since referrals are newer to me, it’s easy for me to forget, and then things get even more complicated. That doesn’t happen often, but it has happened. The insurance company expects you to remember that you need a new referral every 6 months or after 3 appointments, whichever comes first, and when you have multiple doctors, that’s not something that’s exactly easy to keep up with. I think it’s unfair to leave that up to the patient, it’s more than most of us can remember, especially when we have memory loss and chronic brain fog.
In addition to the referrals, trying to get ahold of some of my doctors is next to impossible. Trying to making an appointment is like something out of the Hunger Games– “May the odds be ever in your favor.” That’s what happens when you have something like POTS, which is way too unknown, yet affects millions of people. Too many people, and not nearly enough doctors to help all of us.
4. Managing medications
This one keeps getting more and more difficult as new medications are added to my regimen.
It’s hard enough getting prescription renewals for simple medications like beta blockers and antidepressants, but if you’re on something that’s now considered a controlled substance (it could be a pain medication or something like Adderall, needed by millions of people for their ADHD), it is now so difficult to get your medication. This is something I intend to make a separate blog post about, because I know it’s something that deeply affects the chronic illness community directly.
There are no refills on controlled substances, and that can really make things difficult. While I understand that addictive drugs are a problem (opiates in particular), some people need these medications to live, and access to these medications should not be so difficult.
Since there’s no refills, I need to call my doctor’s office each month to ask them to refill it. It ends up being an extremely stressful thing to do because I can never get ahold of anyone at my doctor’s office, and I leave messages and messages until I finally get someone who can help me. It takes days, and you’re only given a few days to refill the medication before you run out.
Laws now only allow you to refill the prescription a few days before you run out, which is not enough time, as some pharmacies aren’t as quick as others. I just googled it, and it says 7 days beforehand, but a doctor’s office recently told me it’s only 3 days beforehand, and that’s as soon as they’d call it in. What’s the truth? This was even the person whose only job is to refill controlled substances. This is all for me to get 5mg of Adderall, by the way. FIVE measly milligrams. This is proof of the difficulties of now faced. I didn’t even mention the fact that I had to go WITHOUT it when I was on vacation in another state, and they told me I had to go without it because they wouldn’t give me an extra 3 days.
On top of those difficulties, I also am on a medication that has to be made at a compounding pharmacy, and I can only get it once a month. Getting this is another complicated mess, and managing all of this is so stressful, and definitely time consuming.
5. Dealing with insurance companies
It isn’t a secret that American healthcare is lacking quite a bit, and no other country in the world experiences what we do when it comes to cost of care. The for-profit healthcare system is horribly unfair, especially for a nation with the highest rate of chronic disease.
Everything is nickel and dimed, and instead of our doctors approving what we should and should not be taking or tests we should be doing, it’s the insurance company who has the last say. A person paid to deny people in order to save a buck, when they have no medical degree and no right to make such decisions. What qualifies them to play God? Absolutely nothing.
Because of this, those of us in the U.S. are constantly having to call our insurance companies and question and argue about why something was denied, and why they should listen to our doctor, who knows a hell of a lot more than they do. It doesn’t always work though, and we often go without because the insurance companies deny the claims. Sometimes it’s the doctor’s office who takes on the job of fighting with the insurance companies, and we’ll just get a letter (usually of denial) from the insurance company.
The amount of stress this puts on the American person is astronomical, especially when we have chronic illness, or god forbid, something like cancer involved. We’re just trying to survive, all while big pharma and the corporations make their billions upon billions of profit.
6. Research, research, research
Before I got sick, I knew very little about chronic illness. Once you get sick though, everything changes quickly. Getting diagnosed with dozens of illnesses in the span of less than a decade, and most of which are considered “rare” (when they’re really not even close to rare) definitely forces you into doing your own research to better understand your diagnoses.
The amount of miseducation and lack of education on POTS alone is alarming, to say the least.
Ehlers-Danlos Syndrome has more awareness at least, but still isn’t nearly as researched as it should be.
Those are just 2 of my many, and I know others can relate.
It’s gotten to the point where you have to do your own research, and know a lot about your own diagnosis (and sometimes before diagnosis) before and after going to the doctor. There have been many times when I’ve known more about my diagnoses than my doctors, and they usually don’t take that well.
It’s important for us to be able to understand and explain our own bodies in order to properly talk to any doctor about it, but also to sometimes educate them on what they unfortunately don’t know themselves.
The research seems to never end, and I’ve read dozens of scientific papers and articles over the years. I wish I paid better attention in biology so I could understand it even better, but science was never my best subject.
7. Any task takes more time than the average person
The average person do tasks every day with little thought to how much time it will take versus how much time it would take someone who is chronically ill. Simple tasks like cooking a meal, cleaning, organizing, doing laundry, washing dishes, grocery shopping, and everything else that must be done in order to keep up a home or just live is so much more difficult for us.
While it could take you 30 minutes to cook a meal, it could take us a couple of hours, because we might need to rest in between dicing and cooking. Cleaning could take double the amount of time, because we have to rest in between wiping down the counter and cleaning the sink.
If you’re reading this and you have chronic illness, you probably nodded along to each point made.
If you’re reading this and you’re healthy, I hope you learned that we do more than just sitting at home, having a great time.
It really is a full-time job being this sick. We’re not lazy, we’re chronically ill. We’re doing what we can to do the best we can, and that has to be enough.
