Living with the complexities of Sjögrens is more than just managing our symptoms and physicians — it includes managing our emotions and expectations (our own and others). This is especially true when a Sjögrens relapse, or flare, hits.
If you’ve seen me speak or have read my blog before, you know that I think a lot about the emotional challenges we face living with a chronic illness. I’ve lived with Sjögrens for many years now; so why was I surprised when a relapse hit me last week and I had to miss a friend’s birthday party? It was a very special birthday for many reasons and I couldn’t even keep my eyes open to drive there. It’s been a long time since I was angry with “my Sjögrens”, and I immaturely crossed my arms and shouted: “Are you f&@%ing kidding me?”
Apparently, all my yoga, mindfulness and acceptance training was nowhere to be found! And it took me two days to find it. Here’s how…
Revisiting Grief During a Sjögrens Relapse
Grief is a natural and healthy process to go through when first diagnosed. There are five stages of grief (Kübler Ross) and I’ve further refined what I think grief looks like for a person diagnosed with an Autoimmune Disease. It is common to revisit a grief stage when a relapse hits, however, one generally becomes practiced at reducing the occurrences or length of grieving time when you’ve been living with the disease for many years. But even well-practiced patients can revisit grief when a relapse hits during an important event (as I did).
When this relapse hit, I had several emotions that included:
- Anger that I can’t control my relapses from hitting at important moments,
- Sadness that pain and fatigue limit my choices,
- Guilt because I have disappointed friends with a last-minute cancellation and let them down,
- Loneliness due to isolation. I plan my social events to be successful (as in I don’t plan a lot of them), so I can get lonely in between social events and especially lonely when I miss a planned event.
I am betting that these sound familiar to you.
Bouncing Back from a Relapse or Flare
Since my goal is to live well, it is important to me to get on top of my grief and my relapse! After years of practice I know what works for me. News Flash — “powering through” does NOT work!
The first line of defense is to get on top of my Sjögrens relapse and physical needs to reduce inflammation as quickly as possible. My goal is to get back to a reasonable state of functional health. My list includes:
- diet of lots of vegetables and proteins. I feel best and feel a big decrease in inflammation with no grains and no sugar in my diet. Since I really want comfort food at this time (carbs), this isn’t easy,
- gentle Yoga or Yoga Nidra,
- deep breathing,
When my emotions come into play as they did last week, I need to step up my game to move through my Sjögren’s relapse with:
- Meditation and getting centered,
- Focus on gratitude and specific things for which I’m grateful,
- Watch James Corden and Carpool Karaoke or comedies,
- Focus on Being MINDFUL, and RESPONDING to things and not REACTING (especially to my own thoughts),
- Listen to great music.
And when I start feeling a bit better with more energy:
- Do something creative (like play the piano),
- Call a FUN friend with a goal of laughter. This is usually my oldest friend Lynn, who does not like me to say “oldest”, and prefers me to say “the friend I’ve known the longest”.
So thank you for letting me vent and share. I, too, can get angry and sad at dealing with this disease. But I do try to be true to my two key life edicts (post diagnosis):
- How to live the most life I can while caring for myself, limiting relapses and achieving dreams and goals. It’s a fine balance of knowing how to hope, move forward, and measure risks and rewards of choices.
- When a relapse or emotional down turn occurs, how do I care for myself and motivate myself to get back up and start living my best life?
I hope I have given you a couple of new ideas to help you get back to your “new normal” when a Sjögrens relapse hits. Please comment and share your best tips so I, and others, can add to our portfolio of options!
You can also check out other tips on the Sjögren’s Syndrome Foundation website. Always our best source of accurate knowledge!
Sjogrens flares are incredibly humbling. So hard not to take as personal failure. Still, it demands that I prioritize my choices, value what I can do, be creative, and discover some self compassion.
Janet, thanks so much for your honesty. As it has in the past, it helps me again today.
I hear you as my fatigue is real, lack of energy, and finally understand that it is my Sjogren’s causing this. I’ve not tried Yoga but do walk as much as possible. Friends are not understanding so it causes me to be friendless. But, am doing an Open Mike tonight to share some of my stories (not of Sjogren’s though). I hope it energizes me to write more. Thanks for your candor.
It is very comforting to know someone else feels the way I do and struggles too. My most common trigger is stress and the hardest to control.
Thank you all for sharing thoughts and tips. I have been diagnosed with Sjogren’s for about 3 years Pulmonary was the main problem but am also plagued with joint inflammation, incredible fatigue, dry mouth and dry eye. I can no longer do my ideal job as international flight attendant for over 20 years and 02 machine every night not doable on layovers. I tried a full time desk job for 6 months but too much fatigue and aches so I went to PT job but too physical, they heard my breathing and sent me home.
It’s been a rough road and you are so right about the emotional toll it takes. It’s taken me a long time to get over the anger and it still comes up on occasion, especially With stress. Wish I had more words of wisdom on how to deal. A sense of humor is essential and surrounding yourself with fun and happy people helps. My kids are great support as are siblings and friends. I meditate a lot, yoga stretch and that helps somewhat.
I drink alcohol, sometimes too much when I am frustrated , anger and depressed wrong thing to do but I control it. I always eat a sensible diet but have not cut out sugar yet, cut down. I always have fruits and vegetables and tried a vegetarian diet didn’t have as much effect as hoped.
Janet, we have met and I thank you for your continued involvement and keeping us informed.
Thanks for your comments, Thomas. Sharing helps us all!
I would like to know exactly what is a Sjogren’s flare. I also have Hashimotos and IBS and severe arthritis in places. So I feel as if I am always flaring and trying to praise the Lord, worship etc. but lately it’s getting the best of me. I am 70. Been going through this off and on for 30 years.
For many of us, it is a spike in inflammation that causes us to “go down”. For me, it feels like I have the flu, with more joint pain, greater brain fog, and a deep fatigue. They can be small flares or very large ones that can take a long time from which to recover. But everyone is different. And it is often hard to tell what illness/ailment might cause our challenges when we have multiple issues. No matter what the definition of a flare is, self-care is the best response!
I have this for more than twenty year without knowing at the same times I have Lupus, most of the syntoms are similar . I’m always without energy, tire, problem with my lungs, my skin is always itching,my mouth , eyes, and ears dry. the pain there no one day that I can say I have not pain. My hairs fell off forever you can imagine how I can feel, I hate my face, head and myself because the person that I’m now is complete different . I don’t like to invite people to my house , I don’t want them to look at me like that. I can’t expose to the sum because I get headche, pain in my body please don’t ask me where because is my whole body.. I want to find the way like a hospital where I can donete my whole body so they can try to find out how to get the cure or medicine that can help to aliviete the syntoms and special fatigue, pain, I just want to be with my feet elevete because the terrible pain I have .. My eyes are so dry that itmake me think that I have eyelashes inside my eyes, I’m getting blink because the Lupus’s is destroing my vision. I have to stop here because if I keep wriring it will take weeks doing it. Thank you for sharing your space with me at least I can be open and say how I’m felling. Good luck for everyone.
Ana, Thank you for sharing. I understand your pain and wish you all the best! Do keep trying new therapies and products to help find the best relief you can. Take care of yourself!