Have you noticed how big chunks of time, weeks and even months, become a blur because of chronic illness? It’s easy to see how living with pain, severe fatigue or body parts that don’t work is draining. Even healthy people can understand that.
But there’s another aspect of living this life that gets overlooked and that’s just as high impact. I’m referring to the time that’s eaten up by health care appointments, tests and treatment. Just like your bad health, time spent this way wears you down. Worse, it increases the sense that your life is out of control.
Last August, I fell. Although I tried to limit the diagnostic tests and appointments, doctor’s appointments, x rays and MRI’s became a necessity. Broken ribs, rotator cuff tears and a slightly fractured elbow.
These breaks created a lot of pain and limited what I could do. Diagnosis and treatment was complicated — and required more appointments and tests — because my multiple sclerosis nervous system goes haywire with pain.
The next month, increasing blurriness in my left eye was diagnosed as extraordinarily high pressure (glaucoma) with Posner-Scholssman cornea syndrome.
I know this sounds sounds like a lot. But the funny thing is that looking back on the past four months, it was the time spent in diagnostic tests, medical appointments and treatments that really rocked my balance. I’ve developed mental tools that allow me to continue living my life when I have to integrate new body problems.
But facing how little influence I had over time spent traveling, waiting and seeing doctors or taking tests would make me boil. I had to block off an entire half day of work for a 15 minute medical appointment or risk missing client calls or other work commitments. Over the past four months, I’ve spent about 60 hours in doctors offices, having tests and getting treatment for just these two issues.
When I complained about this to my husband, he said, “You couldn’t possibly have a job with this schedule.” He didn’t mean it to be a momentous statement but it really sank in. What he meant to say is, “You wouldn’t be able to do this if you had an employer.” And that’s when I saw how my frustration must be so much greater for anyone who is employed.
I’m not trashing or blaming doctors or any one part of the health care system. I don’t have any ideas how to improve this.
But we, patients, owe it to ourselves to at the least recognize this aspect of living with illness. The time spent managing our health places a greater burden on an already over-taxed situation. We need to be aware of this because it impacts our relationships and our performance. Just as much as our taxed bodies.
What about you? How do you manage work and frequent health care appointments? Do you collide with competing needs, find yourself stretching the truth or outright lying? Have you given up altogether and quit? These are all responses. Which one is yours?
Baffled says
The marked increse in medical appointments is one of my reminders of how seriously ill I have become. Since I use both western medicine and alternative treatments I finally had to take a serious look at whether I needed to stay home and rest or go to one more acupuncture treatment. After some serious consideration I have limited my weeks to one counciling appointment, one medical appointment and one alternative care appointment per week and never more than one per day. I just can’t handle more than that. My preference would be only one appointment per week total but that just isn’t possible. I need the rest more than the ‘cure’ more often than not.
Mary says
Time on various appointments is a big factor indeed. My primary response is delaying all even slightly non-urgent care. For example, some time in the past I took a drug that had a side effect of raising my cholesterol levels, despite me eating very healthy diet. The drug was stopped, and I really need to come back for a re-test, to see if the problem was solved or further intervention is necessary. This has been delayed for 6 months now, primarily because I had to do a lot more urgent medical care. Similarly, I have been known to space my PT appointments – say, make it 3 weeks instead of 2 – in order to control the time I spend on this.
I am very fortunate that I can do this because I have a job which allows for very flexible hours. But I am very much afraid to lose it – I can hardly imagine how I would find the time necessary for various medical appointments (whether routine things I do for my chronic problems, or various acute things that pop up) if I were in a typical 9-to-5 job.
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Rosalind says
Thanks for sharing that. I notice your comment about your flexible job. You are fortunate and I, too, hope that continues!
Rosalind says
It sounds as if you’re taking charge by noticing your tolerance and shaping what you think best. Rest versus treatment — We can’t be sure what’s really “best” but that doesn’t have to stop us. I hope that your choices stay clear to you.
Jason Reid says
I truly get a feeling among many health professionals that they don’t “see us” as productive people who have jobs and lives.
From the social worker who tells me to listen to my body and not work when my body doesn’t feel like it (that’s realistic) to the late night pharmacist who has my record on file but refuses to give me my sleeping pill prescription until he can talk to my doctor (who has gone for the day) – they do not appear to think that I am a person who needs to function at a certain level to make a living.
I try to explain to people that it is a balance. Maintaining my health is no good if I have no income for food and shelter. On the other hand, if I avoid my appointments and don’t maintain my health at all, my health will deteriorate to the point where won’t be able to work.
One thing I try to do when the going is good is to make sure I have plenty of refills for medication and schedule follow-up appointments less frequently so I can minimize lost time. This is much more difficult to do if you have a pressing problem or problems.
Rosalind says
Jason- I’ve found that my best relationships with my hc team is those who know me and we’ve developed trust. I “fire” anyone who doesn’t work for me and see this as a give and take and really “get” what this life is about. Your point about the pressing problem is really when the rubber hits the road .
Patricia says
Rosalind, I hear you loud and clear. I am an RN who had a fulltime,high stress job. MS made me cut back to part time. Then, I found myself with additional symptoms.I fell in a parking lot causing a sprained anle and bruising on my body.
I talked to my husband about SSI but we are not up to the hassle of dealing with that right now. And I also have limited my appointments: acupuncture, chiropractic, MD, tests. As a medical professional I am often astonished at the way medical staff treat sick people as though they have no other life. I hope you feel better.
Rosalind says
Coming from someone in the “system”, good to hear that you understand. I’m sorry to hear you’re considering SSI because it’s such a hassle and in the long run, really limiting. Is there anything you can do with your talents that your body an handle? Thanks for your good wishes.
Anne says
I have had a few jobs with very tough schedules and deadlines. During those times, I also had lots of medical appointments and situations where I had to take lots of time off (between traveling to the appt and the actual test). My strategy was always to do overtime to make up hours, but that grew wearing too. The balance of work and appointments really became my life.
The stress of those jobs no doubt exacerbated the symptoms so it really was a Catch-22. I was so anxious about my job, getting the work done, and management perceptions, that I believe the symptoms were inflamed.
No simple solution to any of this, from what I can tell so far.