Thread by @keikoinboston

1. A rant about the administrative burden of being chronically ill.

The most frustrating aspect of living with chronic illnesses are the people who treat you like you must just be hanging out resting in bed for fun or who imply that you’re lazy.

2. Today I spent the majority of the afternoon catching up on medical phone calls even though I should have been resting. But I don’t have an assistant so I have to make all these calls myself.

3. I made/received 25 calls from around noon to now. This wasn’t to 25 different offices. Some were redials due to bad connection or going through voicemail options trying to figure who the best person was to leave voicemail for.

4. Some were follow ups from appointments and call last week and others were stuff I’ve just been putting off dealing with.

5. Five calls were to just one doctor’s office where no one answered. I kept being transferred to the answering service or in one case calling a wrong alternative number I’d been given. I never reached anyone and no one returned my call so I’ll have to try again tomorrow.

6. The rest of the calls were:

- pharmacy
- laboratory
- physical therapy dept

- 3 similar depts at different hospitals to find out if they provide services I’m looking for.

- 1 doctor’s office to find out if she provides the type of care I need.

7.

- Rescheduled an appt I now have a conflict with because I have to see a different doctor that day/

- Tried to make a follow up appt for next year with a doctor I saw last week. Was told to call back next year.

8.

- Asked doctor’s asst to fax an order for PT to a different hospital because their systems don’t talk to each other.

This was the only enjoyable call:

- Patient relations to offer a compliment to the guy at the lab who went above & beyond in giving me info. 💖

9. Total phone time was only around 95 minutes but I had to clean up notes in between calls and do some research so it took the whole afternoon.

Most of it was spent on hold but you can’t really do anything else since you don’t know when someone is going to pick up.

10. I did eventually take a break to eat about halfway through and I also did some research for a thread I’m drafting. But this meant I couldn’t do other things I needed to do because I needed to make as many calls before close of business as I could manage.

11. Depending on how many of these offices call me back tomorrow morning, tomorrow afternoon may be more of the same.

12. I’ve often tried to explain to friends and family how being sick is equivalent to a full-time job but I think it’s very hard for people to understand what that means when they hear you’ve spent half the week in bed and other half going to doctor’s appointments.

13. This is the boring crap that most people with chronic illnesses don’t talk about but it’s a significant part of being ill if you don’t have an assistant, partner, or family member who can make these calls for you.

14. This really shouldn’t be so difficult either. it shouldn’t take me more than 6 calls to reach my a doctor’s office or receive a follow up call (the 5 calls were following up on a call last Friday about an upcoming test).

15. He’s a specialist at one of the top hospitals in Boston and for some reason they don’t seem to have enough staff to handle the volume of patient calls.

16. Some of these calls were due to needing to get orders faxed between hospitals either because their systems don’t talk to each other or because reasons. It’s up to me to call and get the correct fax number then call the ordering doctor’s office to give it to them.

17. This wasn’t the case today but sometimes I have to make dozens of extra calls because I can’t get my doctor’s offices to call my insurance company to get info the insurance company won’t give me at the patient line or because my doctor’s offices won’t call each other.

18. Over the course of a busy month this adds up to multiple days on the phone as well as hours/days reading and sending messages to my doctors and their staff in 4 different patient portals.

19. I don’t have high hopes for this but I really hope the future of medicine will include better online tools for patients and healthcare providers as well as better care coordination that doesn’t put most of the burden on the patient.

20. Continuing this thread…

Nick makes a great point that I didn’t delve into.

https://twitter.com/NickWolfinger/status/1409987195176292352

21. I tried to keep the thread general because I think this is something that many people with chronic illness deal with and it’s not specific to the illnesses I have.

22. I have ME/CFS & MS among other conditions as well as mental health issues.

23. My mental health diagnosis has changed over the years but I think my therapist said she’s currently coding it as an anxiety disorder - for a while she’d used adjustment disorder related to the lack of diagnosis for my failing health (that turned out to be ME/CFS).

24. I’ve been told by friends and read that people with ADHD, autism, major depression, severe anxiety, and other severe mental health issues can face extreme challenges in making even one phone call, let alone 25.

25. I’m fortunate to have started with good organizational skills before I got sick and although I can’t perform at the level I used to, I’ve still retained some ability to use these skills.

Although in the early years of getting ME/CFS I struggled much more.

26. These days I manage to pass as very organized and I’m quite possibly more organized that some people who don’t have chronic illness but my level of organization now compared to what I was like before I got sick seems like a big difference.

27. Part of the problem is that ME/CFS & MS both have brain fog as a symptom where remembering, planning, organizing, and executing tasks becomes more difficult.

healthline.com/health/multipl…

healthline.com/health-news/st…

28. For added fun I also have chronic pain as a symptom (cause isn’t yet known but it seems like it might be central sensitization due to my ME/CFS) and pain can interfere with executive functioning.

en.wikipedia.org/wiki/Executive…

29. You might wonder why I spent all afternoon making phone calls. Couldn’t I make phone calls later this week?

Yes but I find it much easier to batch my phone calls now for multiple reasons.

30. I used to be able to multi-task really well and task-switching was no problem. I could move seamlessly between phone calls, email, talking to people irl, messaging with people online, running a quick errand, dealing with paperwork, researching, etc.

31. What I’ve learned over the past 10 years or so is that I have more difficulty multi-tasking now and that task switching is also difficult.

It can also take me time to remember what I’m supposed to do if I forgot to write it down at all or in a single list.

32. When I started making calls just before noon today I actually had no idea how many I needed to make or who exactly I needed to call because I’ve been unable to pull it together to make a to do list in a while.

33. After I made the first batch of calls I had a feeling I needed to make more but couldn’t remember to whom so I did other things for a bit until I remembered. I thought I was done just after 3pm but then…

34. Since I knew I was unlikely to reach a human or get a clear answer to my questions if I did (most of the folks who answer the phones rarely have the ability to answer detailed questions even if they’re non-clinical)…

35. … I knew I needed to make as many today as i could because I’ll probably be waiting the rest of the week or until next week for a call back.

36. Only one of the questions I had was really time sensitive but when you don’t feel well it’s so easy to keep procrastinating. Some of these calls were calls I should have started making last October.

37. I was thinking I had more I wanted to add to this thread but now I’m too hot and too tired.

If you know someone with chronic illness don’t assume that because their life isn’t as exciting as yours that it means they aren’t doing anything.

38. Sometimes we’re doing a lot of stuff that we have to do to manage our healthcare but it’s too boring, frustrating, or infuriating to talk about.