| Visible Person, Invisible Problem

January 27th 2015 Social life

By VisiblePersonInvisibleproblem | Published Tuesday, January 27, 2015

Last week I attended a memorial service for my congregations' piano accompanist. Lois was a wonderful pianist who probably didn't realize how talented she was, and was also a wonderful human being. I don't think she tried to be special, I think she was just being herself, but she connected and touched many people. This was evident not just by how many attended the memorial, but by all who spoke. I didn't stay for the entire service (too long and wrong time of day for me), but I'm glad I was there. Lois certainly wasn't famous in the traditional sense of the word, but she will be missed by many including myself, and I keep thinking that her legacy - to be so connected - is wonderful.

I heard her daughter say as I left the memorial that Lois "was the real deal" when it came to friendship. Friendship is very important. All relationships take work, and friendships are no exception. That's not breaking news, I realize, nor is the fact that it can be difficult to actually maintain friendships. This is true for a lot of people for a lot of reasons, but - yes, there's a "but" - it's more complicated when invisible disorders create limitations. Ideally, people connect over mutual activities or interests, or just get together. This is easier said than done when doing things, even something simple, isn't so simple.

I feel for anyone with an invisible (or visible for that matter) disorder who lives by themselves; Ron and I help each other out in a variety of ways. I always miss a part of, or all of some family events, but we go as a family down to Hyde Park (Chicago) a few times a year to visit my parents, and I am now usually able to go to Ron's cousins in Evanston when they hold a Passover Seder. I'm grateful for Kol Hadash Humanistic Congregation, and attend an occasional Shabbat service, monthly Adult Education programs on Sunday mornings, and am a member of the youth education committee so that I still know what's going on in the Sunday School.

Connecting to other people is important, and the internet is a wonderful resource. But being with people is still, I think, really important. There's basic outings that people do, like going to movie or live production theatres which I don't do. I AM able to attend the annual Deerfield High School (DHS) musical. I'm very familiar with the auditorium, and I know what I can do, how I can manage as long as the production isn't too visually intense. Same goes for plays that are put on in the Studio Theatre. This is why I did not attend Fall Play 1 at DHS, but I did attend the second one, a production of The Importance of Being Earnest.

I know that people generally go out for lunch, dinner, or meet for coffee, and it's just part of the social fabric of their lives. Going to a restaurant is complicated, and not in truth something I currently enjoy. It takes planning; it's much better to go when it's not crowded, because lots of people and noise is a problem. I can't deal with TV screens, loud music, or ceiling fans. I need to call ahead to make sure that I'll be able to get food. Although I've always ended up being able to eat, the food accommodations do not always go without a hitch. It's nice not to have to cook, but because of all the planning, it's not a stress free experience.

In my ideal world, I would have the energy to do what I want, regardless of the time of day, with only the normal constraints people have; time and money. And everyone would be understanding and accepting of limitations. I would speak up when necessary, and otherwise my limitations would be irrelevant. When or if my health did come up, I would always be able to find the humor in my situation, rather than feeling like I just bumped into a wall. I would never have to stop and think about the query "how are you?". There's nothing wrong with this social greeting, and it's nice when people really want to know how I'm doing. But at times I feel like I need to de-code the encounter; is this someone casually asking as so often happens, or do they really want to know? It's difficult coming up with the appropriate reply, especially since my progress is slow, and I usually resort to "I'm OK".

In my ideal world, the sadness and frustration, knowing that I'm missing out would be rare. I wouldn't have to remind myself that my situation could be worse. I wouldn't have to tell myself to focus on the events or outings or whatever that I can participate in, and try not to pay attention to all the other stuff. Facebook is a wonderful place to connect, share stories and videos, and learn. But it's also a reminder to me of what I'm missing out on; when someone posts a picture, or talks about something they've done. The picture or status might be any number of ordinary or special occasions. I know there's a busy, mobile world out there, full of people doing all sorts of things.

I worry sometimes about maintaining friendships given that I'm kind of out of the social loop, and I know that I'm not alone in feeling this way. You don't have to be a senior citizen to have medical problems of some sort, and I know I'm not the only middle aged woman with invisible disorders. So I let myself, as with other issues, feel the emotions, and then do my best to move on. My reality right now is my reality, and wishing it were different doesn't make it so. What does make a difference, what CAN help is doing my best not to get stuck. For me, a social life that expands beyond the internet requires thinking creatively, looking for whatever opportunities I CAN participate in. The opportunities don't have to be huge chunks of time; an hour or even a few minutes here and there can build connections and make a difference. And I have to remember that if I'm doing the best I can to create what I can for a social life, and to sustain my friendships, that's all I can ask of myself.

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January 21st 2015 What I want doctors to know

By VisiblePersonInvisibleproblem | Published Wednesday, January 21, 2015

As I've detailed in other blogs, I've seen a lot of different doctors over the last several years. My experience has ranged from really good, to mediocre, to really bad. All the doctors were nice, but a number of them were not, in my opinion, good doctors. Along the way I switched internists; having a good internist is, I think, important. I've gotten referrals from my new internist for specialists when there was an issue she couldn't deal with.

After my first visit with my internist, I sent her a detailed medical history, because I felt she wasn't getting an accurate picture based on standard forms Ron completed with my help. I sent her a link to the MAV page on VEDA, but when I saw her she said she'd been too busy to look at it. I noticed that my online medical history did not include anything about my vestibular or vision disorders, so I e-mailed her that these needed to be included. My internist has a good "bedside manner" when I'm with her, is open about treatment options, and asks if I have any questions, but can't spend too much time with me. She sends me an e-mail (signed with her first name, not as Dr. so and so) reminding me to schedule my annual physical. I think my internist cares but is overloaded. She should get a full picture of me, but with limits on her time, this is an impossibility.

In contrast, my allergist is wonderful about taking his time with patients. But he runs horribly behind because the system really isn't made for doctors like him who want to take their time to communicate properly with their patients, and cover all the issues. Once a consultation is over, it's very difficult to get a doctor on the phone - it's always an assistant of some sort. No matter how nice the assistant is, this means more waiting on my part, and another layer to go through which can result in miscommunication. I was surprised and very impressed when an oral surgeon recently called us himself and showed a great deal of patience answering questions.

I'll probably never really have the opportunity to talk to a room full of doctors, but what if I did? Different doctors, particularly specialists, have their areas of expertise, but what I want really has nothing to do with a particular specialty.

So here's what I'd say:

"Hi, my name is Tamar Schwartz and I have medical problems that you can't see...invisible disorders. Between myself, and other family members, we've had some really good experiences with doctors, but there have also been a lot of problems. Dealing with doctors, and the medical system in general is complicated and not very patient friendly. I want to tell you some things, but first I have some questions and a comment for you -

1) Do you remember why you became doctors? Did you want to help people?

2) Were you passionate about the sciences when you were in school?

3) Does the human body fascinate you?

4) When you're with me discussing a problem, think about what you would do if you were me.

To me, being a doctor is about using your medical knowledge to care for people, helping them with personal, often important problems. The medical system seems to get more and more complicated all the time, and I want you to always be my advocate.

I'd like to think that wanting to help people with medical problems is still REALLY important to you. I always want to know about conservative treatments first; having surgery is never going to be my first choice unless not having surgery isn't an option. I also want you to be willing to discuss/explore non-traditional treatment options; medication isn't always the answer. If you DO recommend a med, please be honest about it; tell me what it will do for me but also tell me about side effects, because that matters. Regarding non-medicinal treatment, make sure you know what you're talking about, and if you don't have all the info, tell me how I can be fully informed. When I have a consultation, I need you to take your time, and I need you to listen very carefully to me. I don't want you thinking about how many people you've already seen, or how many more you're going to see. I need you to give me time to process what you tell me, so I can figure out what my questions are. I don't ever want my consultation to feel rushed.

I need your medical expertise, but I also need your compassion. Even if I'm seeing you for a basic checkup, you have to understand that like millions of other people, my medical history is complicated. I want you to take a few minutes BEFORE my appointment to check my medical records, so you are clued in when you come into the room. You need to be aware of my medical history when you discuss things with me, and you need to use language I can understand. Please don't talk to me as if I'm just a medical puzzle to be solved. I'm not just one medical problem, but I AM a whole person and I want to be treated as such. When you discuss my medical health, it affects my mental health and vice versus. You're the medical expert, but *I* am the expert on ME, even if there's no research to back up what I tell you. I live with myself every day, so when I tell you something, believe me.

I want you to admit if something comes up or is an issue that's not your area of expertise, and then tell me who I should consult. Don't be arrogant. Don't behave as if if you don't know the answer, there is no answer - being a doctor doesn't mean you know everything about the human body. Nor does it mean you understand every disease or chronic condition, and I know that. Knowing that much would be impossible, but I expect you to do your best to help me figure things out. Don't give me info, or give me a diagnosis unless you're sure that's what's going on. If you're not sure, tell me more tests are needed, or that I should see this or that specialist. Even though you are a doctor, I know you're human, fallible just like me; you can make mistakes. If you make a mistake, take responsibility for it. And tell me what to do if the mistake created a new problem.

So in a nutshell, here's what in my eyes makes you a good doctor: your medical expertise, acknowledging when you need to make a referral, listening well, honesty, having my best interests at heart, being empathic and taking your time. I can honestly say in all my medical travels over the last several years, I can think of only three doctors I would recommend."

I am well aware that there are pieces of our medical system that I do not discuss here, that impact both patients and their doctors. The closest I got was to comment that the medical system has gotten more and more complex. I chose to keep my focus narrow; what I personally would want to say to doctors. That being said, I do think we need a system that better supports medical professionals whose purpose is to cooperate with each other, and take care of people's physical and mental health.

January 14th 2015 Practical stuff

By VisiblePersonInvisibleproblem | Published Monday, January 19, 2015

I've learned a variety of management/coping strategies both on my own, and from my therapists that help me right now, in a very practical way. I decided to share a number of these all in one blog; maybe others will share as well. I found they ended up in four categories:

1) Feeling more grounded, 2) General management, 3) Electronic/tech help, and 4) Venturing out. I've included a few services I use that make a tremendous difference in my life. I also hope that by sharing this, anyone reading this who doesn't have these kinds of challenges gains some insight and/or understanding.

Feeling more grounded:

1) Chairs on wheels - place a folded towel on the floor. Office chairs often are on wheels, and if your floor doesn't have carpeting, the movement can be way too much. I have a large towel folded in half placed under the wheels of the chair at my computer. It still moves, but much less, and I feel much more safe, stable and solid.

2) People often move around when they talk. When sitting down, they bounce a leg, foot, etc. I politely ask them to please hold still, that the movement bothers me. If they are pacing, I ask them to please stop. This is hard to do in group situations, in which case trying to focus on whatever isn't moving can help.

3) Standing - Touch a counter, table, wall, whatever is nearby. Sitting - I make sure if I'm sitting down that both feet are flat on the floor. No crossing of legs or ankles. Again, touching furniture so you know where you are in space is good. I'm a big fan of Lumbar support pillows - I own three.

4) Out in public, letting yourself sway a bit is actually OK. A lot of people move a bit when they stand, and probably won't notice. Going with the movement is easier, I think, than trying to hold still. Bodies are meant for movement.

5) Phone - when I'm on the phone, listening in only one ear feels very strange...I do much better when the sound is coming from both sides, so I use it on speakerphone. For personal conversations you'll want to be in private, but I find it really helps to have the sound coming at me like a real conversation. I tell whoever I'm speaking with that I'm using my speakerphone. For non-personal conversations, the way people use their cell phones these days, it's really not a big deal.

General management:

1) I use a sleep wedge - I cannot handle sleeping flat, and there are different heights depending on what you want. I have one that is about 7" and one that's more like10". Not expensive, and much easier to use, I think, than a pile of pillows which tends to move around - very annoying.

2) Dimmer switches - these are not expensive, and some may be able to get a friend or family member to install them. There are some rooms where we don't have these, but I find dimmer switches super helpful to cut down on intense lighting when needed.

3) Nightlights - it's much harder to navigate in the dark for me, so nightlights, or a long lasting small fluorescent or LED light helps a lot. I also think during the winter when there's less daylight, it's a mood lifter, which is good when you're dealing with these challenges.

4) Taking breaks - I don't like to just sit and do nothing, though sometimes I have to. What is a break for me may not be for someone else. For me, sometimes I literally get up and walk around the room, other times my break is doing a very different task to change things up for my body. I actually lie down and rest, setting an alarm, once in early afternoon.

5) Getting stuff out of the dryer - I like to be able to either sit down or stand when I get stuff out of the dryer. I have a basic plastic stool with a folded towel on it. I don't like standing on stools now, but it's an easy seat when I need it.

6) I do a lot of cooking, so I try to cook in batches and freeze, make enough for leftovers. Standing at the stove, taking things in and out of the oven can be difficult. If you have the space, and don't mind defrosting a freezer once a year, large freezers are inexpensive. It's just a big cold container. Well worth it.

Electronic/tech help:

1) Google translate is like hi-tech magic - I cut and paste a paragraph or two into the box on the left, click on the speaker icon and listen to a female voice read me the paragraph. There seems to be a limit to usage before it needs a break, but I recently listened to a news article for 20 minutes, and when it was done, I needed a break too :-) ! Anyway, I highly recommend this tool for online "reading." NOTE: GT works in other browsers, but better in Google Chrome.

2) Speaking of reading - again for online - you can zoom a page to make the font larger, or cut and paste something into Microsoft Word and then format it so it's easier. I like short lines of text. For regular paper, putting something on either side of the page sometimes helps, or folding paper so you're not looking at the whole thing at once. This is a time when tunnel vision is good.

3) Listening to books, etc. - most public libraries have audio books and you can listen to the CDs on cd players if you don't (as I don't) want to be on your computer. There's also a FREE service called Choice Magazine Listening - http://www.choicemagazinelistening.org/ - you need to send a doctor's note saying why you need their service. Then you get a special playing device which you can listen to with or without headphones. It's VERY easy to use. The cassettes that they send of short stories, poems and various articles - four times a year - are USBs that are in special cassettes that you put into the player. You get each one for two months.

Also, I highly recommend Illinois Talking Books - https://www.illinoistalkingbooks.org/ - this is another free service. They are in other states as well. I don't think it's hard to have a doctor's note that does the job, and they have a pretty extensive library of books. I use this service a lot - and people who read the books do a wonderful job...they are the unsung actors and actresses out there! I use the same playing device as for CML.

Venturing out:

1) My town - a northern suburb of Chicago - offers discount coupons for taxis. They didn't even look at the letter from my doctor. I strongly encourage people to see what if any services are available in their communities that may help.

2) Speaking of going out - I don't go to restaurants very much, but when I do, I ALWAYS call ahead. Looking at the menu online is helpful, but speaking with a manager to make sure that having dietary restrictions met won't be a problem makes for a much less stressful outing. I have had glitches, but it's still worth it. If it's a new restaurant, I ask about TV screens and ceiling fans. I can't tolerate either, so this is important.

3) Haircuts - I've written about this in more detail, but here are the basics: I don't get my hair washed there, I always have my chair locked so there's no movement, and at my request, the ceiling fans are turned off.

5) Solid chairs and location. If you have a choice of chair, I always go for the more solid, not-super stuffed/upholstered kind. Sometimes this means speaking up, or moving chairs around a bit, but to me it's worth it. Regarding location - if I go to something, I think a bit about where I want to sit, rather than just plopping in the first available seat. I also think about what may be in my field of vision, and what I'll be dealing with - is there something I can do to make it a bit easier on me? For example, sitting so I'm not looking at passing cars, or moving screens. When I attend adult education at our Sunday School, I like to sit in the middle in the back. My view is more equal on either side, and if I DO need to get up for a break, it's easier.

6) Fanny pack - lastly, I no longer carry a purse. I much prefer to have a fanny pack at my waist. It's easy to access, and for balance having something at my waist feels much better than having a purse slung over my shoulder. Fanny packs are not expensive - you can get good, durable packs from outerwear/camping type retailers.

I'm sure I left some stuff out, and that someone else's list would look a bit different. But it would still reflect a lot of work, a great deal of effort. I'm struck by how much there is to figure out in order to deal with these kinds of invisible disorders. So we all need to give ourselves a lot of credit for what we manage.

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September 9, 2021 - One decade... be present.

January 27th 2015 Social life

January 21st 2015 What I want doctors to know

January 14th 2015 Practical stuff

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