Yeah. My birkies and I know what this feels like.
When I receive letters like this, I realize how vitally important it is for us within the autoimmune community to support each other:
Julia, Sjogren's is now ruling my life and I am not handling it at all well. In the past, I was able to cope and do small things that interest me. Mostly small things around my home such as changing a piece of furniture, lamp, etc., but my life is one big aching, hurting, burning, no smell, no taste "blob". I really need some encouragement.I'm sure that this person has family and friends that want very much to understand and help, but unless you have walked a mile in our shoes.......it's hard.
One sjoggie knows what another means when she makes this kind of plea for understanding and support. We know how discouraging it is to tell this person that, "If you only would exercise more," or "Have you tried (insert latest ridiculous internet cure-all)?" or "Just get a good night's sleep and you'll be all better in the morning," or "If you could lose a few pounds," or "If you could gain a few pounds," or "My cousin's best friend's neighbor has the same thing and they were cured completely by soaking in pickle juice on every other Wednesday," or "I think it's really all due to anxiety. Or stress."
And of course, there's the dreaded......
You. Don't. Look. Sick.
Aieeeeeeeeee!!!
We KNOW what not to say. We KNOW what a difficult and uncomfortable disease this is. We've been there and done that. Until we experienced this disease, we didn't understand either, not really and truly. But unfortunately, we do now. And that's why we all need to step up in our efforts to reach out to each other when things are tough.
I can tell this person that I really care that she's having a hard time of things, and I can also share bits and pieces of coping strategies that helped me over the rough patches. And hopefully she will know that I mean every word and do know about her pain, and am sincere when I ask for her to share her feelings of grief and loss when thinking of how her life has changed with the arrival of autoimmune disease.
I get it. WE get it.
How do you cope when faced with really challenging days in your disease? Who GETS it in your life?
6 comments:
No one in my family gets it. Hearing one too many exasperated 'what's wrong now?" has taught me to keep my mouth shut about my illness. It doesn't stop me wishing but it does me stronger.
I sure understand all that is shared. Trying to stop sharing when my 4 wonderful, world wide, intelligent and loving children ask
"how do you feel." Recently one commented all you do is talk about your health - so trying to stop.
As I have shared before I am ever thankful this did not come on full force until I hit 70. So thankful that through this blog I have found support, encouragement and information that doctors do not give me. I have found out more about Sjogrens, Lupus and RA though
my research.
Thankful that I have found you.
Still difficult to understand that for days I feel horrible and think
what am I going to do about the future and then a few days of normal and I smile and think it is going away. So trying to take one day at a time and forcing food with no taste and cannot lose anymore weight....
Family knows, but still doesn't quite grasp what the illness entails...the severe fatigue, the brain fog,the lack of energy and the pain that varies in intensity, and that you can't keep up with activities and keeping a clean house.
They understand but seem to forget while you're going through a decent phase, that it's just a phase, a not a normalcy for you and expect things to be the same as they were BEFORE.
And as Heda said, sometimes you keep things to yourself, because you seem like you're always complaining and no one really wants to hear you, and you cope on your own and through blogs like yours.
This is too new and I thank God Venus Williams is going to finally get it. We need her as Face for this disease. We are like pioneers out here.
I live with a person with mental illness who has no insight. He's like a whole family of people that don't get it.
I'm going to send an info bomb of Julia's blogg and send as much as I can to my doctors at the University of Washington because they don't get it.
The Mighty Sandra, the gal that has been helping me for almost a year, is finally getting it.
When my kids were young, I had a plate that had a dial like the hands of a clock. All around the clock were words like Fair and Stormy and clouds on the horizon. Words like that.
Maybe this would help our younger children to understand what we are going through. Have them make their own plate and use their own words and I think this would help the children in our lives 'get it'.
I really do believe that Sjogren's is 'learn as you go'... and unless you've got it you don't get it... I have it and I am not sure I get it.
I sympathize. Feel your pain.
When my kids would get sick I would say... I would rather it be me than you... My husband is having some health issues and I said the same thing to him last night. Suffering of any kind is hard and the support and love of friends and family makes it much more manageable.
ToOdLeS.
My family and a few (make that 2) friends try hard to understand and stick by me when things go bad but nobody really gets it. I've lost a lot of friends over the years because I can't do things and because I can't drive due to severe RA in an elbow. It gets lonely. But I'm blessed that I have my friends and family and that they understand as much as they do.
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