Missing Out and Chronic Illness

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Not being able to participate in aspects of life is a tough reality for many of us with autoimmune disease.  It is something that I'm definitely grappling with at the moment. There is a constant balance of trying to protect my health and at the same time manage other priorities.  I often struggle with the question: What is it actually possible to do without health consequences?

This upcoming weekend I am supposed to attend a family member's wedding across the country from where I live.  I have been pretty determined to attend and believed (or perhaps hoped) my health might actually be in a place where I could make the six hour flight across the country.  My husband and I still waited as long as we could to purchase the tickets.  We told the bride and groom that we couldn't guarantee our attendance, to hold off submitting our names for their count as long as possible, since there was always a chance that we might have to cancel at the last minute.

Everyone in the family has been rooting for us to come.  As background, I haven't been able to make a trip like that in at least five years and have missed almost all of our families' and friends' events that have required out of town travel over that time.  This one event holds real significance for me.  All my first cousins and their children will be in attendance and the last remaining relatives in the their 80s and 90s.

Things looked good last weekend.  I was confident that I would make it.  I was looking forward to the adventure...as well as the warmer weather.  However, within a mere forty-eight hours from announcing my intention to go to the wedding, things began to change.  My eye and the area surrounding it became red and started feeling painful.  My face began hurting as well.  My eye doctor fit me in immediately for an appointment yesterday, and just my luck, I have an eye infection.  I know from experience as Sjögren's patient who has had both a corneal ulcer and uveitis, that eyes are serious business.  Getting this infection under control and making sure it did not spread any further had to become my number one priority.  I also knew, as my doctor reminded me, that making a long distance trip with my eye compromised and my other health issues just didn't' make sense.  

While I know intellectually this is the right decision, I am definitely taking this turn of events particularly hard. I have handled most of the disappointments surrounding how my life has changed without getting too upset.  I have become very good at being thankful for the little things that I can do, as opposed to focusing on what I cannot.  I was thankful once I began being treated to have a day without severe neurological pain, to be able to just read an article in the newspaper, and have the energy to walk around the block or even go to the grocery story.  But now I am starting to expect more--and I don't want that to change.  I refuse to give-up on the idea that I will be able to work and participate in life with family and friends when there is so much that I want to accomplish.  I know that I will keep forging ahead despite these many twists, turns, and unexpected health challenges.

I have been coping by calling everyone in the family who will be there to catch up--letting them all know I will miss seeing them and how much I truly want to be there with them to celebrate.  Everyone has promised to send me real-time pictures of the festivities and I'm expecting play-by-play descriptions of all the events.  I trying to gently remind myself that the fact that I could consider even attending was progress.  There will be more happy occasions in the future and I will figure out a way to be at them.  

But I also think it is ok to mourn and just be sad that I am missing out on a momentous family occasion--and to feel keenly that it is isn't fair that having chronic illness has meant constant compromise, lifestyle modification, and putting many things on hold...while my friends and family are excelling in their careers and running marathons for fun.  I am not sure anyone can perfectly accept the limitations of these tough autoimmune diseases--and I think that there will unfortunately be other times when throwing up my hands and saying "THIS REALLY STINKS!!" might actually be the healthy thing to do.

My Best Laid Plans: Yoga and Autoimmune Disease

It is always a bit of a shock how quickly my health can change with autoimmune disease. Twenty-four hours ago, I was  planning to go to my first yoga class in a number of years.  It was advertised as a gentle, restorative class for those with  health conditions and chronic illness.  I've heard and read that yoga at the right pace can be helpful for those with autoimmune conditions. It was something I had been thinking about doing for a number of weeks and this would be my day.  For  me, this was a big step--feeling well enough to participate in a group activity or class--a real indication of my health  progress.

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So I created a schedule for the morning to make sure that I got out of the house, putting the time of eating breakfast and even taking a shower into my smartphone.  I was trying to plan and schedule for all possible contingencies so there would be no  reason that I would not make it there.

Ha. Well, this contrary body of mine had a different idea. It reminded me that I don't run my calendar. It's my body that  has the big say.

Instead of going to yoga, I found myself in nerve pain once again. Just when I felt like it had been away long enough that I could plan my own schedule.  Once it started, I knew that yoga was out of the question.  My day went from being centered around  trying a new activity to just getting through the hours, minutes, and even seconds of the day. I started to write about my pain, but decided no.  Not now. I'm not going to let it back in.

I kept running over in my head was there something I did that triggered this.  Did I over do it with Thanksgiving travel and  family activities? I know that's not how it works, but at times it's impossible not to think this way.

Well, here's hoping this is a temporary problem caused by some combination of new medication and cold weather. We'll all find out together I suppose. If you read a post about yoga next week, you'll know things are under control.

For now, I would love to hear about others' experiences with yoga who have autoimmune disease and if it has been beneficial.

Calling My Doctor's Office: It Shouldn't Be This Hard

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I had an experience with my internist's office recently that just made my blood boil--and I know that many other patients have had similar interactions with their physician's offices.  My doctor had nothing to do with the interaction and it was a phone call with one of her office administrators that I am writing about.  It was a clear reminder why healthcare can be so unfriendly to patients and why for people with chronic illness constant interaction with the medical system is a stress on its own.

I called my doctor's office to deal with a timely and serious medication issue and to send recent abnormal test results.  I was doing what I was supposed to do--responsibly addressing and coordinating my own medical care between doctors' offices.  The story in brief is that the administrator on the phone repeatedly scolded me for calling the phone number that I did.  She kept repeating, "do not ever call on this number it is for emergencies and for physicians."  I explained that this is the phone number that my internist has specifically given me to call.  (Not to mention that my internist has also given me her cell phone number and direct email and there is good reason for this. She has told me I am one of her most complicated and sickest patients.)

Despite my best efforts to relay the instructions my doctor had given me, it was no use--the scolding just continued.  When I was finally able to relay the reason for my call, which was nearly impossible because the administrator was trying to get me off the phone as quickly as she could, she again repeated that I was never to call this number again. I felt as if I was being treated like a child who is told she had misbehaved.  Not surprisingly, the administrator did not help me with either of the two issues I was calling about.

The reason I see this internist is because she takes my health problems seriously, is responsive and compassionate, and encourages me to be in touch.  But this administrator clearly finds my interaction and communication with the physician bothersome.  I wish that I was not sick and did not require ongoing medical care.

The last thing most people want to do is be involved with a physician's office.  The people who work there should serve as a kind and a effective conduit between patient and doctor, making what is often an unpleasant experience better.  While this is not always the case, I have found that some administrators in physicians' offices seem to relish serving as a barrier between patients and doctors. They are officious as opposed to helping patients. 

I am sure this administrator's work is not always pleasant since it requires dealing with anxious and upset patients at times. But that is the nature of the job.  A helpful and friendly staff member behind the front desk or on the phone at a physician's office can make a huge difference for patients and their families.

As a patient, our best recourse is to file a complaint when we are treated poorly and if the situation is bad enough to leave the doctor's practice.  The next time I see my internist, I will tell her about my interaction with this staff member.  Doctors are in charge of their offices and it is their responsibility to make sure those who work for them do their job well.  In my opinion, there is a real problem in the culture of healthcare when patients, the consumers of healthcare and those who are sick, are treated as the enemy.  

When Friends Dismiss Your Autoimmune Disease

I have decided the entry of the word psychosomatic into common parlance is a real curse for those with autoimmune disease.  Having heard the word so many times, it's hard for me not to get really angry with people.  I try to better explain Sjogren's to them, but it really gets me nowhere most of the time.

I need a quick and witty response prepared for the next time someone asks if my symptoms are psychosomatic so I can make them feel as bad for asking, as I do for hearing it.  Would I be on medicines that lower my immunity for a psychosomatic condition?  Unfortunately, I feel like I have to prove how sick I have been when someone asks me this question.

My most recent encounter was particularly hurtful because it was a friend whom I thought was understanding about my health.  I wasn't feeling well, but really wanted to see her nonetheless; and it was a mistake.  It always is.  I have noticed when I don't feel well it is much better to cancel plans, but sometimes I still push myself.  Even with many of my friends, I have found that I have to be "on" to deal with them and feeling sick and fatigued makes it harder to do that.

As I wrote about in a post on the complexities of Social Life and Autoimmune Disease, everyone wants to hear that their friend is doing better.  When someone like many of those with autoimmune diseases, doesn't get "obviously" sick and then feels better or worse without a visible physical manifestation or a clear end point to their condition, it goes against what we expect.  But that is still no excuse for anyone to minimize these very serious illnesses.

I am sad that this conversation happened because I am not sure that I will be able to move past it.  Because asking me if my symptoms are psychosomatic is probably one of the worst things you can say to me.  And just because you took college psychology or were in therapy for a year does not mean you know anything about my medical condition.

It still shocks me how few people know about autoimmune diseases given that estimates are that 50 million Americans are affected by them.  It is clear that those of us with these diseases have to become the educators.  It is hard being sick and then on top of that feeling like you have to prove it to others.  Maybe my response next time will be that I wish my condition were psychosomatic, but unfortunately it is a serious illness that has already attacked my glands, nerves, and lungs just to name a few.

Have you encountered these tough and uncomfortable situations and how did you handle them?
Do you have any particularly good responses to those who doubt your illness?

Social Life and Autoimmune Disease

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Having autoimmune disease can be difficult to navigate in terms of relationships with friends and family.  People see illness in black and white terms. You have cancer or you are in remission.  You have the flu today, but you are expected to be better in two weeks and return to normal activity. When I first started to experience the cascade of symptoms which would lead to a diagnosis of autoimmune disease, I still tried to participate in all the standard social activities with family and friends.  I wanted everything to be OK – I wanted to be OK.  I felt ashamed that I was not well so I glossed over what was happening to me.  I didn’t have a diagnosis yet so it was hard to explain to other people. How can you justify your illness when no one knows what is actually wrong with you?

When my health declined rapidly, I had no choice but to tell everyone that I was sick.  I couldn’t work, go to school, or participate in family and social events all together.  There was no more pretending that I was OK.  My husband went to mandatory social occasions without me and served as my impromptu spokesman explaining why I could not attend and how things stood with my health and my eventual autoimmune diagnosis.  He lovingly protected me from the outside world when I was too sick to be able to participate in it. Things continued on like this for almost two years with me at home ill and in pain until I found a doctor who diagnosed and started to treat me.

With my health thankfully improving, I am presented with the new challenge of how to negotiate beginning to socialize again?

When I make plans with people, I always make the caveat that I might have to cancel if I am not feeling well. Even with an explanation about autoimmune disease and how symptoms can fluctuate daily, weekly, or monthly, the truth is that people can get annoyed when I do have to cancel.  But that is a risk I have to take or I would never be able to socialize.

On the other hand I have found that when I have recently been up to seeing friends or previous work contacts, people keep saying over and over again how good I look or how much better I look.  They haven’t seen me in a long time and I think they expect me to look horrible or they just don’t know what to expect, what to say, and they are uncomfortable.  It can be a difficult to hear because it feels like my illness has been negated -- like it is not tangible or real.  I have gotten used to hearing this line and sometimes I want to delve into an explanation about invisible illness and why you can’t see autoimmune disease, but usually I control myself.

But here comes in the next challenge -- expectations.  Once I have been up to and had a good evening socializing with friends, it seems that I am expected to be able to participate again in whatever event comes next.  People begin to see me as “better”.  In a way I should take it as a complement, my friends want to spend time with me and to see me more.  There could be worse things.  To me, it feels like pressure to do things that I might not be well enough to do.  Even with my health on a better trajectory at the moment, I still have to be very careful and there are real limits to how much I can do without overtaxing myself.

It is certainly a catch-22 in my mind -- make plans and risk having to cancel sometimes at the last minute or showing up, doing well, and having people think you are better and can do just about anything.  Even for my friends who are very supportive, it is clearly confusing how I can look good one day and then they might hear how badly I am doing the next.  

These are good challenges to have now that my health is more stable, but that does not make them any less  tricky and sticky to navigate.  What are your strategies for managing others expectations and negotiating your social life?