I wasn’t planning on doing any writing today but to be honest, I need to write. Actually, there are many times that I need to write. I cannot even tell you how many times I come to this blog to write about how I am feeling regarding living with this illness and instead of blogging, I close down my computer and walk away.
Why?
Because I feel like I don’t have anything positive to say.
And it has come to my attention lately that this is probably not the healthiest way to deal with the psychological impact of having a chronic illness. Of course, I already knew that fact, but I never seemed to think that it applied to me. I thought that the best way for me to get through day after day with this heavy burden that is called Sjögren’s syndrome, was to stay upbeat and positive.
Put on a smile.
Be grateful for what you have.
Make the best out of a lousy situation.
Hell, write a book about it even!
And you know what? I DO believe that keeping a positive attitude is a key element to living well with chronic illness, no doubt about that. However, I now realize that in my efforts to keep myself from getting down and out, I have placed this unrealistic expectation on myself that I need to be upbeat and positive all the time when dealing with others, especially in my writing. I try very hard not to complain whether it is online on social media, or with my friends and family. And I think that is a disservice to us all.
The exceptions to this are my husband, my parents, and my brother. They get the real deal, 24/7. Why? Because they are “safe”. I don’t worry that they will judge me, end a friendship with me, or realize that being in a friendship/relationship with someone like me can be really hard at times. It is not for the weak or for those who cannot handle the unpredictability of what this illness brings. They see me at my worst and love me anyways.
But, living like that is exhausting.
And I cannot keep it up.
I am here to tell you that Sjögren’s syndrome sucks. It is this pervasive and debilitating illness that NEVER gives you a day off. Every single morning I wake up knowing that at the age of 43, I am never going to have a day again where I am completely healthy. It will never go away. It will follow me every single moment of every single day until the day I die. And hopefully, that will be because of old age, and not because of Sjögren’s complications.
That is not a negative attitude.
That is called acceptance.
Acceptance is what frees you. It is acknowledging the reality of the situation while at the same time, making a plan to live as wholly and completely as you can, despite it all. It is knowing that you can do anything you set your mind to while at the same time knowing that doing some things are not worth the price you will pay in the end.
Acceptance is being your genuine self. Not pretending to be fine when you are not. Knowing the value of letting people see how things really are. How exhausted you are or how much pain you are in. How discouraged you are when you spend half of your work week in doctor’s appointments.
Acceptance is having and using the ability to say “no” to people and requests, especially the ones that come from people who don’t try to understand, or maybe don’t even care about, your limitations or restrictions. Maybe its saying no to a trip that you know will be difficult or a stressful situation that may exacerbate your symptoms.
So I am going to work on acceptance and I will forewarn you, it probably will not be pretty at times. It will involve being more honest and I’m sure, using more swear words because that is just what I do. I am aiming for progress, and not perfection. Maybe you can too…
Reading this brought tears to my eyes. You've said so much that I feel. I've stopped blogging, going on Facebook, etc., as I have NOTHING positive to say. Everyday, I feel like when I had the flu pre-Sjogren's, except now add the lack of tears and saliva, the dry sinuses, the cartilage gone from my joints. I feel lazy because I'm so fatigued I get nothing done. People always say, "feel better soon".
Hang in there girl…..:)
I'm battling celiac disease and hashimoto's which destroyed my thyroid. I had my thyroid removed last year, and haven't felt good in so long……..so believe me I get it, I know how difficult it can be.
Hang in there, God has us and he will not forsake us…….:)
It is a fine line to walk with attitude between optimistic, acceptance, and pessimism. I agree with everything you said and since my cancer diagnosis in June I have bounced back and forth among all three. I honestly think that acceptance leads to more true optimism and happiness. I am also don't really bring my illness up much on social media, just not the spot for me, but I think you will find friends and (extended) family much better listeners/soundboards than you think. And you have been much stronger and braver than you seem to be giving yourself credit for.
This is such an insightful article. This sentence is really critical to those on the early path to acceptance: " It is knowing that you can do anything you set your mind to while at the same time knowing that doing some things are not worth the price you will pay in the end." Thank you for writing this.
That's a raw deal: having your thyroid removed. I am sorry to hear that. But you are right, he has us. 🙂
I understand because feeling better soon is all relative and you never feel completely better permanently. My two cents though is to keep blogging…you have something to offer the world through your writing!
You may be right on both counts, about people being better listeners than I think and being stronger than I give myself credit for.
Thank you for reading it and taking the time to comment.
Thank you for baring your heart and writing this article Christine – I think I needed to read this right now. I have always felt the need to fight against all my health issues but now I'm in my 40s and my 'juvenile arthritis'/'lupus-like syndrome' that I've had since my teens has now been defined as Primary Sjogrens Syndrome I just feel so tired of it all. Perhaps if I can learn to accept more then I can move onwards more easily. xxx
Thank God you are human. Dear one, I'm proud of you. Being REAL is HARD. My debilitating illness is easy compared to yours and as a 77 year old who is also a caregiver to 2, you have been an inspiration. But to know the TRUE walk you are on is even more freeing for me. Hugs Nd blessings.
I'm glad it helped you…
It is hard. I will be honest, this comment made me cry. But that's OK, because that's part of being human.
I recently found out I have Sjogren's Syndrome. My aunt has had it for 15 years. One of the things that was recommended to me is to check my mercury levels. One gal I talked to about it, who also has an autoimmune disease, asked if I get angry. I said, "oh yeah." And she said that mercury can do that. Turns out I do have toxic mercury levels. I started the detox shortly after I got the Sjogren's results. The detox is hard, so I have to go very slow. This could take a year or more, but I feel it is worth it. The mercury detox also gets all the other toxins and heavy metals out, so who knows what else is coming out in the process?! Any way, just something else to consider. Also, did you catch the Autoimmune Summit on-line last month? Worthwhile buying the talks if you missed it.
I will look into this. Thank you for the information!