Tuesday, April 8, 2014

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.


  1. Excellent post. You're right when you say, "This really stinks!" because it DOES. We have to work our way through the grieving process after life changes so drastically and becoming chronically ill definitely is one of those changes; mourning the loss of our "old" selves is without a doubt an important step in working our way through grieving into acceptance.

  2. Missing out on things, because of your health, can be really disappointing. :o( In my opinion it's absolutely OK to have a mini pity party for yourself. Make sure you spoil yourself with a small treat this week!

  3. So sorry you will not be able to attend. It is double hard when it comes to family. My poor husband was all excited last night showing me a concert in a neighboring town 30 minutes away, on the Friday of my birthday weekend in June. But inside all I could think was all these negative thoughts: I will be exhausted ( I am lucky enough to be still working part time Mon-Fri); an hour just in travel to get there and back; there are no chairs; it is outdoors at 6pm which will still be sunny,,,,,,,,you get the idea. I just feel like a whiner when all I want to do is just rest up to tackle the next week. Heck, it takes all I got to get the groceries on Saturday, and clean house on Sunday. But he is so excited :(

  4. I'm so sorry you had to be disappointed! It does stink! :( I'm glad that your family did understand and not add to your disappointment by disapproving of your decision - who needs that when you are already restricted?

    Like you, I hope that there will come a time when we can find ways to do more rather than less. It's so important to hold on to hope - difficult, but important!


  5. I'm so sorry. It's OK to mourn the losses. That's how we heal within and become able to move forward.

  6. I have a few autoimmune conditions and can definitely relate to this article, Autoimmune Gal. my world has slowly become smaller and smaller. I spend a lot of time connecting with others on the internet which I did not do in the past. I missed easter this year as I was in hospital. This was a huge family gathering so I can really relate to this post. Keep smiling